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 Hello I need some advice! Very scared atm..

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PostSubject: Hello I need some advice! Very scared atm..   Tue May 08, 2018 9:52 pm

My name’s Catherine and I got a pseudo tumor a dew years back after having optic nerve swelling. I also had tinnitus but my GP just brushed it off as nothing. I do have chronic anxiety and Pure OCD that makes me wordy constantly about having certain conditions but after I had optic nerve swelling the Optometrist sent me to a neurologist that just gave me naproxen and told me to lose weight. Also he saw my facial hair and told me to looking into seeing a gynecologist for diagnosis for pcos and told me to get an mri done. I wanted to get an mri done but my mom didn’t want to drive me to nashville to be put under to so it. I have bad claustrophobia so I just gave up gave up on getting one done and a apinal tap to lower the pressure levels if my mri turned out fine. I am a dependent and live with my parents and was in my early 20s and still am now to help watch a mentally challenged sibling during the day. Anyway, the pseudo tumor went away on it’s own but now I have double vision and see a pressure on my eyes when moving them. I saw an Opthamologist for a visual field test and things came back fine. She also did say that it was a tough test to take. She said that my double vision is likely due to astigmatism but I am worried that it is due to the pressure. My parents don’t believe me in going to all these doctors to begin with and are not being supportive. I also have neck pain and chronic tension headaches (also dizziness) still and even told her about IIH causing blindness and deafness. I also think it’s too late to improve my double vision. It is bothering me constantly as a result and it’s all my fault for not getting a spinal tap. The Opthamologist said doing a spinal tap won’t make it go away so Idk. I am wanting to see a new neurologist to get me some pain relief and maybe explain to me what IIH is instead of just telling me to lose weight. I am overweight with pcos and have emotional binge eating problems due to worry and this isn’t helping me. I am mostly scared of going blind and deaf from the this but also hurtsfrom people brushing me off as well. Maybe I can’t get treatment because of my mental illness getting in the way. I’m super suicidal right now from chronic worrying and intrusive thoughts.

I apologize for looking for a place to vent but I have no where else to talk about this. I know this is waay to personal for people to respond to but I am not sure what else to do. Also it doesn’t help that my mom is paying for my insurance and is brushing this off. I also need to get back on PCOS meds as well since my optometrist said this would help the weight loss.

Also I’ve been having red and different colored flashes but the Opthamologist said it was most likely due to dry eye. I feel like I Also does anyone experience Visual snow or static images?
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PostSubject: Re: Hello I need some advice! Very scared atm..   Wed May 09, 2018 3:50 pm

Hi Catherine! I'm so sorry you're struggling right now. Do you have a counselor or someone that you talk to about your anxiety and OCD? I wonder if they may at least be able to help you with some coping mechanisms until you can get your vision and PCOS under control, especially since you've mentioned feeling suicidal. If not, there is a national toll-free suicide hotline at 1-800-273-TALK (8255) that operates 24/7. I would recommend starting with mental health supports because you'll need it throughout this process and they may be able to help sway your parents.

As far as your symptoms, you can always request a second opinion and your insurance should be able to provide you with information regarding specialists that are in network. Unfortunately, there are a lot of different factors and diseases that affect the eye. If your visual fields were ok and you don't have any other symptoms, then it may just be double vision and could be addressed with eye muscle exercises or other treatments. The visual field should show any deterioration of your vision, so it sounds like at least there's no vision loss at this point..a second opinion would confirm it. Dry eye also causes a lot of symptoms, so hopefully you're using artificial tears of some sort. I know my retina specialist has told me to use them 500 times a day if needed and it does help. I'm not sure about the "visual snow or static images" as far as vision, but I know that can occur with migraines and certain headaches. Considering the stress you're under, it wouldn't be surprising that your headache symptoms are acting up. They have also found a relationship between PCOS and IIH, so may be contributing to your symptoms and important for you to address.

IIH can affect everyone differently, so diagnosis and treatment can be difficult. The largest population affected by IIH is overweight women in child bearing years, so physicians have been trained to address weight first. Some people with IIH have been able to manage their symptoms with weight loss and we always encourage members to be as healthy as possible. We also understand that's easier said than done, so just do your best at making healthier choices and taking walks or something active when feeling up to it. It sounds like you have PCOS in addition to other health concerns that can affect your weight, but making an effort will show physicians that you are trying to improve your situation. A symptom log may also help clarify your symptoms, triggers, etc. We have an example in the Useful Guides and Print Outs section.

I honestly would start with mental health supports, making an appointment for PCOS, and request a second opinion from another ophthalmologist. I know it's difficult when you don't have support from family and friends, but a lot of people struggle with this "invisible illness" and we end up being our own advocates. Let us know if you have any further questions or concerns regarding IIH and we'll do our best to help.

Take care,
Julie
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PostSubject: Re: Hello I need some advice! Very scared atm..   Thu May 10, 2018 3:14 am

hi Catherine, I'm so sorry for your situation.
- double vision is a symptom of IIH.
- people with IIH have reported many different visual changes including visual snow.
- most women with PCOS also have obstructive sleep apnea.
- Obstructive sleep apnea can be a cause of IIH.  obesity makes this almost a given.
- most of us with IIH also have anxiety, and it appears to be a symptom of the pressure.  it can cause hopelessness and despairing feelings.
- you can have normal visual fields with papilledema
- there is such a thing as "Open MRI" which is not a tunnel, and your doc should give you meds to help you relax.

I am sorry for your parents not taking this seriously.  this is a pretty typical experience for us with IIH.  if you can get on any other type of insurance if you move out, maybe you should break free of that situation.  if you are a dependent then your parents should be taking care of you properly.  if they are not, does this qualify as dependent neglect?  do you have recourse with the state?

I think that you should get a second opinion about your vision.  I think you should get the MRI, and the spinal tap, and a sleep study.  you need to get some testing with positive results so that your parents will pay attention to this.  the spinal tap is unlikely to make it go away, although sometimes it can reset things, and you need it for a proper diagnosis.  if the spinal tap shows an elevated pressure, then I think you should see a neuro-ophthalmologist.  I think a new neurologist is in order also.  maybe if you start taking action on these items it will help you feel more control and less anxiety.
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PostSubject: Re: Hello I need some advice! Very scared atm..   Thu May 10, 2018 9:29 am

@medmisfit wrote:
Hi Catherine! I'm so sorry you're struggling right now. Do you have a counselor or someone that you talk to about your anxiety and OCD? I wonder if they may at least be able to help you with some coping mechanisms until you can get your vision and PCOS under control, especially since you've mentioned feeling suicidal. If not, there is a national toll-free suicide hotline at 1-800-273-TALK (8255) that operates 24/7. I would recommend starting with mental health supports because you'll need it throughout this process and they may be able to help sway your parents.

As far as your symptoms, you can always request a second opinion and your insurance should be able to provide you with information regarding specialists that are in network. Unfortunately, there are a lot of different factors and diseases that affect the eye. If your visual fields were ok and you don't have any other symptoms, then it may just be double vision and could be addressed with eye muscle exercises or other treatments. The visual field should show any deterioration of your vision, so it sounds like at least there's no vision loss at this point..a second opinion would confirm it. Dry eye also causes a lot of symptoms, so hopefully you're using artificial tears of some sort. I know my retina specialist has told me to use them 500 times a day if needed and it does help. I'm not sure about the "visual snow or static images" as far as vision, but I know that can occur with migraines and certain headaches. Considering the stress you're under, it wouldn't be surprising that your headache symptoms are acting up. They have also found a relationship between PCOS and IIH, so may be contributing to your symptoms and important for you to address.

IIH can affect everyone differently, so diagnosis and treatment can be difficult. The largest population affected by IIH is overweight women in child bearing years, so physicians have been trained to address weight first. Some people with IIH have been able to manage their symptoms with weight loss and we always encourage members to be as healthy as possible. We also understand that's easier said than done, so just do your best at making healthier choices and taking walks or something active when feeling up to it. It sounds like you have PCOS in addition to other health concerns that can affect your weight, but making an effort will show physicians that you are trying to improve your situation. A symptom log may also help clarify your symptoms, triggers, etc. We have an example in the Useful Guides and Print Outs section.

I honestly would start with mental health supports, making an appointment for PCOS, and request a second opinion from another ophthalmologist. I know it's difficult when you don't have support from family and friends, but a lot of people struggle with this "invisible illness" and we end up being our own advocates. Let us know if you have any further questions or concerns regarding IIH and we'll do our best to help.

Take care,
Julie
Thank you for replying Julie. No I don't see a psychologist at all right now. The CBT talk therapy isn't helping my OCD symptoms so I've been looking into saving up for ERP CBT therapy. Talk therapy doesn't help OCD symptoms at all and I learned more about OCD from online than my therapists. Also my mom says my eyes are fine and that I don't need to go to the opthamologist anymore.
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PostSubject: Re: Hello I need some advice! Very scared atm..   Thu May 10, 2018 9:35 am

@Sophiasmom wrote:
hi Catherine, I'm so sorry for your situation.
- double vision is a symptom of IIH.
- people with IIH have reported many different visual changes including visual snow.
- most women with PCOS also have obstructive sleep apnea.
- Obstructive sleep apnea can be a cause of IIH.  obesity makes this almost a given.
- most of us with IIH also have anxiety, and it appears to be a symptom of the pressure.  it can cause hopelessness and despairing feelings.
- you can have normal visual fields with papilledema
- there is such a thing as "Open MRI" which is not a tunnel, and your doc should give you meds to help you relax.

I am sorry for your parents not taking this seriously.  this is a pretty typical experience for us with IIH.  if you can get on any other type of insurance if you move out, maybe you should break free of that situation.  if you are a dependent then your parents should be taking care of you properly.  if they are not, does this qualify as dependent neglect?  do you have recourse with the state?

I think that you should get a second opinion about your vision.  I think you should get the MRI, and the spinal tap, and a sleep study.  you need to get some testing with positive results so that your parents will pay attention to this.  the spinal tap is unlikely to make it go away, although sometimes it can reset things, and you need it for a proper diagnosis.  if the spinal tap shows an elevated pressure, then I think you should see a neuro-ophthalmologist.  I think a new neurologist is in order also.  maybe if you start taking action on these items it will help you feel more control and less anxiety.
I have been wanting to get a spinal tap for a long time. I still am beating myself up for being a coward and not getting the MRI done then spinal tap. I have gotten the MRI done and they saw nothing . My parents have talked about taking me to my disabled brother's neurologist but how do I get a doctor to listen to me? I feel really terrible that my vision will most likely not get better and I do want to get a sleep study done. I'm so sleepy all the time and exhausted. If I have been diagnosed with IIH does that most likely mean he'll listen? I just thought at the beginning ( no one explained to me what IIH was at all ) that IIH went away after the pseudo tumor did but I have noticed when I gained weight the pain comes back. 

Do you know if 27 year olds can be considered a dependent? I'm not sure how to look into that. It does see that this one tax site said they can be any type besides kids. I guess I could consider contacting the APS then?
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PostSubject: Re: Hello I need some advice! Very scared atm..   Fri May 11, 2018 12:33 am

I would call your local social services and ask about your situation, to determine your rights.

Pseudotumor IS IIH.  just different names for the same thing.  it tends to get worse if you gain weight, and better if you lose weight.  sleep apnea does the same thing in response to weight gain and loss.  your symptoms changing with your weight is suggestive that this is the diagnosis.

hopefully your docs and parents will listen if you have a positive lab result.
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PostSubject: Re: Hello I need some advice! Very scared atm..   Fri May 11, 2018 3:14 pm

It just sounds like you have a lot going on. The friends that I know with anxiety and OCD at least have a physician or psychiatrist that monitor their medications. Is your OCD and anxiety completely untreated at this point? I only mentioned counseling because of your thoughts of suicide. They can at least help you sort out your feelings, get you appropriate medication or treatment, and make referrals on your behalf. If you have a good relationship with one of your physicians, a lot of them use social workers for care management and supportive services..it may at least be a place to start. If not, search "supportive services" in your area or contact your local NAMI organization for resources.

Through the Affordable Care Act, I think you can be considered a dependent for insurance through 26 years old, but it could vary depending on the policy. Things like financial dependence, student status, and housing can be determinants. You also may qualify for coverage if you have a disability designation because of your OCD or anxiety. There are a lot of different factors, but a supportive service representative should be able to help you figure it all out and advocate on your behalf.

Unfortunately, a lot of members are alone in their fight. We don't tend to look sick, so family, friends, and even physicians have a difficult time believing us. That's why there are support networks in place and we encourage everyone to educate/advocate for themselves as much as possible. If members don't have supports and are unable to do so, I recommend finding a supportive service. We have put together some talking points for telling family/friends about your IIH and talking to your physician in the Useful Guides and Handouts section. If you still have difficulty finding support in your area, PM me and I'll try to help link you.
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PostSubject: Re: Hello I need some advice! Very scared atm..   Sat May 19, 2018 2:26 pm

Sorry for the late reply. I have been sleeping off and on all week with nausea that may be migraines. Also my doctors office has called me but I couldn’t go to any of the appointments because it was too short notice. They haven’t called or emailed me back yet.I don’t know what to do. I have been trying to keep food down the best I can. I can’t go to the walk in clinic since my parents are out so I am laying down. I will pm you.
 
Also, I forgot to mention here but I went to the ER this Saturday. My parents said I did not have anything wrong with me but took me anyway. My blood pressure was high and I told the ER doctor about my IIH and needing an LP. They did not give me one and said to schedule it with a neuro. Right now I’ve been coping by sleeping and the tension headache and nausea is pretty bad. The pain meds aren’t working but at least on a positive note, I am tracking my calories for what I eat when I can eat. I’m just not sure how to cope. And is it really my fault for getting IIH? I keep blaming myself for bringing this on myself.
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PostSubject: Re: Hello I need some advice! Very scared atm..   Sat May 19, 2018 6:06 pm

it is not your fault.  there are a lot of heavy people who do not have IIH.  and many with IIH who lose weight and it doesn't go away.  and I really do think that sleep apnea is at the root of this, and OSA is caused by narrow jaw structures which you inherited from your parents and which worsened in childhood due to mouth breathing which your parents did nothing to reverse.  OSA can cause anxiety too.  but it's true that the best thing you can do long term for your health is to lose weight.  that is not the same thing as saying it is your fault.

when I got sick in 2009 one of my first symptoms was nausea.  I had it for 6 months straight.  I lost 40 lb in that time.  even though I was thin by the end, I was still sick with bad brain fog, and it took 2 more years to get this diagnosed as IIH.  the point is that the nausea is suggestive that this IS IIH.  you really need to go see your doctor.  if you are just at home, why can't you make these appointments?  have you contacted social services?  maybe they can provide rides for you if your parents refuse to help you.  the fact is that the only thing that suggests this is not a brain tumor is the fact it's gone on for so long and your papilledema reversed in that time.  you should have had an MRI years ago to properly diagnose this.  and the LP.
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PostSubject: Re: Hello I need some advice! Very scared atm..   Sat May 19, 2018 6:23 pm

@Sophiasmom wrote:
it is not your fault.  there are a lot of heavy people who do not have IIH.  and many with IIH who lose weight and it doesn't go away.  and I really do think that sleep apnea is at the root of this, and OSA is caused by narrow jaw structures which you inherited from your parents and which worsened in childhood due to mouth breathing which your parents did nothing to reverse.  OSA can cause anxiety too.  but it's true that the best thing you can do long term for your health is to lose weight.  that is not the same thing as saying it is your fault.

when I got sick in 2009 one of my first symptoms was nausea.  I had it for 6 months straight.  I lost 40 lb in that time.  even though I was thin by the end, I was still sick with bad brain fog, and it took 2 more years to get this diagnosed as IIH.  the point is that the nausea is suggestive that this IS IIH.  you really need to go see your doctor.  if you are just at home, why can't you make these appointments?  have you contacted social services?  maybe they can provide rides for you if your parents refuse to help you.  the fact is that the only thing that suggests this is not a brain tumor is the fact it's gone on for so long and your papilledema reversed in that time.  you should have had an MRI years ago to properly diagnose this.  and the LP.
I have contacted the clinic at home and my PCP but the nurse assistant hasn’t gotten back to me to get an appointment since she is waiting on a cancellation to get me in. . Also I have had two MRIs but not an LP..since I waited too long. 
OSA seems very plausible and I have always mouth breathed. I am afraid to contact social services. I did send an email but no response but I will call.
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PostSubject: Re: Hello I need some advice! Very scared atm..   Tue May 22, 2018 5:28 pm

It is most definitely NOT your fault! Medical field is trained to focus on weight because it is patient driven and they don't have to take any responsibility for our care. Just do the best you can to manage your symptoms and take care of yourself until you can see your physician.

I'm not sure why you're "afraid to contact social services", we're not talking about Children or Adult Protective Services. There are helping agencies, usually mental health or community driven, that have supportive services like transportation and people to assist you with making or getting to appointments. They may even be able to help you with your insurance and other questions. We all need help from time to time, there is no shame in asking! I know you sent me a PM, so I'll help you sort it out once I get more information there.
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PostSubject: Re: Hello I need some advice! Very scared atm..   Fri Aug 10, 2018 7:45 am

Hello everyone! I just wanted to pop in and say that after playing tag with doctors from a sucky clinic back to my old clinic, I’m going to a neuro in a few weeks. I have some topamax to take in the mean time along with metformin and spironolactone as a diuretic. Still having trouble with OCD since I’m waiting on an 8th week return from an erp specialist coming back to my town so it can be more local. Maybe I can live my life with this. Just right now I need to stay in the moment and focus on uncertainty right now. Thank you so much for your help you guys
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PostSubject: Re: Hello I need some advice! Very scared atm..   Fri Aug 10, 2018 2:47 pm

Absolutely! I'm glad things seem to be coming around for you. It's one day at a time for sure! Please keep us updated on your progress.
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PostSubject: Re: Hello I need some advice! Very scared atm..   Tue Aug 21, 2018 10:08 am

I hope this can get better. Seeing the neuro today and my vision dimmed really bad ( like when you rub your eyes) . I am scared he is just going to brush me off like the last neuro and tell me to lose weight which ai do need to . I am also still terrified of going blind and deaf since I have had pressure changes in my ears as well and they hurt. This sucks. I will try and bring up if I can get a sleep study. Also is moving around good even if you’re dizzy ? Does it help relieve the fluid some?
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PostSubject: Re: Hello I need some advice! Very scared atm..   Tue Aug 21, 2018 8:16 pm

Sorry that you're still struggling and hope you get some assistance today! Exertion and strain can increase pressure, so best to rest when you can. I have found some relief laying on my side at around a 45 degree angle helps, but it may take some trial and error to find your sweet spot. I feel a lot of pressure in my eyes, so also find an eye pillow or cold cloth helpful. Others have mentioned a cold pack or heating pad to the back of the neck. It's all really subjective, so you may just have to play around with hot and cold to see which feels better to you. There be more suggestions in the Living with IIH section.
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PostSubject: Re: Hello I need some advice! Very scared atm..   Tue Aug 21, 2018 11:46 pm

I just got back home from the neurologist. There was some optic nerve swelling but not much and the doctor was really nice and kind. He recommended I start Diamox after the LP to see where my pressure is at. Bad part is I have to wait till September 25th for the LP and maybe September 11th if I can get in sooner. I’m just really glad that I got the LP. Hopefully the tylenol pm will help some in the mean time for pain. Smile
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PostSubject: Re: Hello I need some advice! Very scared atm..   Thu Aug 23, 2018 6:17 am

most people with IIH are exercise intolerant.  if your blood pressure goes up or if you grunt or hold your breath while exercising, the Valsalva can increase ICP.  However if you can tolerate walking, this would be good to do.  exercise moves your lymph, and CSF can drain out of the skull via lymph.  I did not notice exercise to help me until my baseline pressure was lower after jaw surgery.  but theoretically it can help as long as you keep it low impact and not strenuous.
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PostSubject: Re: Hello I need some advice! Very scared atm..   Thu Aug 23, 2018 2:23 pm

I get out of breath too easily when I walk. Maybe I should walk slower.
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PostSubject: Re: Hello I need some advice! Very scared atm..   Thu Aug 23, 2018 8:07 pm

I'm glad to hear that you like the neurologist and have the LP scheduled..at least they're doing something!

I know there are some members that had good experience taking Tylenol and Ibuprofen together for pain, but I can't find the posts. You may want to check to see if that's an option, if the Tylenol PM alone doesn't help.

I tend to have symptoms just walking from the building to my car or my desk to the restroom, but I know other members that are active. It's one of those trial and error situations.

I hope you find some relief until your LP. Please keep us posted on your progress!
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PostSubject: Re: Hello I need some advice! Very scared atm..   Fri Aug 24, 2018 10:10 pm

@medmisfit wrote:
I'm glad to hear that you like the neurologist and have the LP scheduled..at least they're doing something!

I know there are some members that had good experience taking Tylenol and Ibuprofen together for pain, but I can't find the posts. You may want to check to see if that's an option, if the Tylenol PM alone doesn't help.

I tend to have symptoms just walking from the building to my car or my desk to the restroom, but I know other members that are active. It's one of those trial and error situations.

I hope you find some relief until your LP. Please keep us posted on your progress!
What do you do for exercise then? I did try to go to the link in thd help section for exercise intolerance but the link was broken. Not finding much help online besides bedridden exercises I may consider doing since I had vision black outs just by walking the other day.
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PostSubject: Re: Hello I need some advice! Very scared atm..   Sat Aug 25, 2018 3:45 am

just walk at the pace that you can handle.  one of the things i was dealing with that seemed to trigger my IIH was that my tongue collapsed and my airway got really narrow.  I couldn't breathe if I laid on my back.  I finally had jaw surgery for my sleep apnea and lo and behold my IIH went into remission.  I still have sleep apnea so the IIH didn't get better because I cured the sleep apnea. I think what happened is that my tongue was pulled forwards in the jaw surgery and it took the pressure off my jugular veins.  just putting that out there.  it might be worth trying to walk with your tongue sticking out of your mouth to see if you are less short of breath like that.  i know it sounds crazy.  I was having episodes where i almost passed out while I was eating, because my airway was closing off when I swallowed.  I would have to sit there with my tongue hanging out to be able to breathe and not feel like I was about to pass out.  if you are having trouble breathing with any increase in demand on your lungs, it's worth ruling this out.  because I think that the airway being narrow affects the jugular veins and may contribute to IIH.
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PostSubject: Re: Hello I need some advice! Very scared atm..   Sat Aug 25, 2018 9:45 pm

@Sophiasmom wrote:
just walk at the pace that you can handle.  one of the things i was dealing with that seemed to trigger my IIH was that my tongue collapsed and my airway got really narrow.  I couldn't breathe if I laid on my back.  I finally had jaw surgery for my sleep apnea and lo and behold my IIH went into remission.  I still have sleep apnea so the IIH didn't get better because I cured the sleep apnea. I think what happened is that my tongue was pulled forwards in the jaw surgery and it took the pressure off my jugular veins.  just putting that out there.  it might be worth trying to walk with your tongue sticking out of your mouth to see if you are less short of breath like that.  i know it sounds crazy.  I was having episodes where i almost passed out while I was eating, because my airway was closing off when I swallowed.  I would have to sit there with my tongue hanging out to be able to breathe and not feel like I was about to pass out.  if you are having trouble breathing with any increase in demand on your lungs, it's worth ruling this out.  because I think that the airway being narrow affects the jugular veins and may contribute to IIH.
That sounds awful but I’m glad your jaw surgery helped put it in remission. I do have bad tmj and chronic jaw dislocations thanks to my ehler danlos so I wonder if I have something similar. I am not sure who to talk to about that though.
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PostSubject: Re: Hello I need some advice! Very scared atm..   Sat Aug 25, 2018 9:53 pm

I think I finally have an accurate date for my first ever LP. Hopefully on Sept 15 with the follow up on Sept 25th . I’m trying to stay calm now about the future but my vision spells are super scary. I really hate seeking reassurance but am having trouble coping. Not sure if there is anyone I could talk to on here in the mean time that could listen ?
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PostSubject: Re: Hello I need some advice! Very scared atm..   Tue Aug 28, 2018 6:26 am

if you are having loss of vision, that isn't something that should wait.  sudden vision loss is a medical emergency.  does your doctor understand what is happening?

my suspicion with ED is that the jugular veins are more collapsible and this increases resistance in them leading to elevated pressure in the CSF.  I have seen things online about people with ED talking about symptoms that sound like IIH.  my orthodontist believes that all TMJ is caused by obstructive sleep apnea.  what I think is that there is an abnormal craniofacial pattern that develops from chronic mouth breathing in childhood, and the anatomy that results causes TMJ, OSA, and potentially IIH as well, because of the angle of the jaw and its effect on the TMJs, and the compression of the airway as well as the jugular veins.  meaning that these things go hand in hand.  that is my own observation.

search up ED and CCSVI.  I'm not sure what to make of CCSVI but it sounds pretty similar to IIH.
https://www.reddit.com/r/ccsvi/comments/4lj8pe/venous_stent_procedure_providing_relief_to_some/
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PostSubject: Re: Hello I need some advice! Very scared atm..   Tue Aug 28, 2018 7:25 pm

@Sophiasmom wrote:
if you are having loss of vision, that isn't something that should wait.  sudden vision loss is a medical emergency.  does your doctor understand what is happening?

my suspicion with ED is that the jugular veins are more collapsible and this increases resistance in them leading to elevated pressure in the CSF.  I have seen things online about people with ED talking about symptoms that sound like IIH.  my orthodontist believes that all TMJ is caused by obstructive sleep apnea.  what I think is that there is an abnormal craniofacial pattern that develops from chronic mouth breathing in childhood, and the anatomy that results causes TMJ, OSA, and potentially IIH as well, because of the angle of the jaw and its effect on the TMJs, and the compression of the airway as well as the jugular veins.  meaning that these things go hand in hand.  that is my own observation.

search up ED and CCSVI.  I'm not sure what to make of CCSVI but it sounds pretty similar to IIH.
https://www.reddit.com/r/ccsvi/comments/4lj8pe/venous_stent_procedure_providing_relief_to_some/
I did tell him about thd blacking out and coming back and he didn’t seem concerned. I am having the tap done in two days so I haven’t been pushing myself just in case. 

That is terrifying. I have been having weakness in my neck and trembling. I am not sure if I should bring that up or not.
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medmisfit
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PostSubject: Re: Hello I need some advice! Very scared atm..   Tue Aug 28, 2018 10:36 pm

Yes, always keep your physicians informed of any symptoms, especially if it's a change or gets worse. Multiple conditions can complicate things, so it's best to let them do the tests and sort it all out. I'm glad they've moved up the spinal tap. If it's IIH, that should help with your vision and other symptoms.

As far as your question about exercise, I do therapeutic chair yoga and have a recumbent bicycle that I try to ride. Low impact activity like walking or stationary bikes should work, but finding your limits will take time. I usually did ok during exercise, but got horrible headaches and vision issues when I was done. I would start slow and just pay attention.

You can PM me or anyone on the Admin Team, if you need more one-on-one support. Good luck with the LP, and please keep us posted!

Take care,
Julie
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PostSubject: Re: Hello I need some advice! Very scared atm..   Thu Aug 30, 2018 11:33 pm

Hello everyone! I just got back from the Hospital and am resting now. My pressure was 22 so mildly high. I am having tingly legs still that come and go.  I hope that’s normal they said it was since the needle poked in around there. 

I didnt see any visual changes so I guess I waited too long (like for the double vision sadly )and ringing in my ears is still there. Maybe they didn’t draw that much or maybe it isnt IIH? Idk..I’m at a loss.

My head does feel a lot better though. And I feel a lot of relief
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PostSubject: Re: Hello I need some advice! Very scared atm..   Fri Aug 31, 2018 3:34 pm

Hopefully, you'll keep that feeling of relief for a day or two! I will be interested to hear what your neurologist thinks. Rest up!
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PostSubject: Re: Hello I need some advice! Very scared atm..   Sun Sep 02, 2018 3:51 am

my pressure was 22 and then 23 on 2 subsequent taps.  my neuroradiologist could tell the difference in my speech pattern before and after the tap and he concluded I have (had) IIH.  my brain fog improved afterwards.  he didn't really take off enough pressure, only dropped me to 17.  what pressure did they close you at?  if your head feels a lot better then I would say that it definitely is IIH.  the problem is that they changed the criteria a few years ago.  you don't qualify now but you WOULD have qualified for diagnosis based on the ICHD-2 criteria, if you were thin.  I don't know how they come up with this stuff honestly.  if you feel better after reducing your pressure, what else do they need to know???  depending on what is causing your vision symptoms, you may or may not get better after the tap.  it may not have anything to do with waiting too long. you might slowly improve if they can keep your pressure down with Diamox.  the ringing in the ears is just what it is.  my ICP is supposedly down to 14 at baseline now but the ringing just keeps getting louder.  I have been sitting here at my computer thinking about how bad it is right now in my left ear.  ugh.  it did start at the time my IIH started, but I think the ear stuff I have is like permanent damage.  I have severe sound sensitivity that just keeps getting worse too.
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