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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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