HomeRegisterLog inFollow us on facebookFollow us on twitterFollow us on youtubeFollow us on LinkedinFollow us on PintrestContact usFeedback


Share  | 
 

 A perfect storm

View previous topic View next topic Go down 
AuthorMessage
medmisfit
Admin2
Admin2
medmisfit


A perfect storm Empty
PostSubject: A perfect storm   A perfect storm I_icon_minitimeTue Feb 12, 2019 5:17 pm

I don't know about you, but I'm tired of being told what a mess I am. My newest neurosurgeon has decided to jump back on the weight loss train, but told me it will be difficult because I have a "perfect metabolic storm". I have gained over 100lbs since I was diagnosed with IIH and gained/lost the same 50lbs at least four times in the last decade. I eat a vegetarian diet with majority unprocessed foods, when I'm feeling well enough to shop and prepare it. His response "if you could lose 100lbs that would be good, you just need to move more". That would be great, but I had to stop physical therapy because it brought on symptoms and sometimes get those head between cymbals moments just walking to the bathroom, so the neurologist told me to stop with tingling or pain. His response "I don't care about your neurologist". He told me that they could keep changing shunts or expand my skull, but implied that I will never get relief until I lose the weight. I DIDN'T GAIN THE WEIGHT UNTIL AFTER I WAS DIAGNOSED. Don't get me wrong, I would LOOOOOOVE to lose this 100lbs. But, what the hell does he think I've been doing?! I don't keep junk food in my house, I'm still working fulltime so I can afford the organic foods or vegetarian frozen options that sustain me now. I also wouldn't be able to have the reiki, massage, dietitian, and counseling services I need to manage my pain and depression when it rears it's ugly head. Seriously, what am I supposed to do??

He's also made sure to tell me that I don't really have a Chiari Malformation because my brain stem is only 3mm below the skull instead of 5mm, but previous neurosurgeon diagnosed it based on my symptoms and fact that my brain fell sometime between my MRI in 2005 and the one in 2009. They also found that I developed Empty Sella Syndrome when the ENT did a CT Scan and MRI a couple years ago. It's interesting to me that I had been struggling to keep my thyroid under control and my glucose levels were rising, but this guy doesn't think my squashed pituitary gland has anything to do with it. I have started seeing an Endocrinologist because my primary physician diagnosed me with diabetes last March, but she's focused on getting my glucose down. They don't understand why my A1C is normal, but glucose levels haven't changed with any medications and still doesn't see how it could be related to my pituitary gland. Deb, I'm hoping you can explain this one to me!

The neuro surgeon did an MRI and requesting LP because he doesn't think my shunt is working and not draining off enough fluid because they've made adjustments and changed setting from 180 to 120 since the VP Shunt was implanted three years ago. Ok, it's been several years since I had a LP and appreciate the break, so I can appease him. Unfortunately, I ended up with sinusitis/pharyngitis and the antibiotic the urgent care doctor ordered can increase intracranial pressure. I didn't realize it until I started having issues and reviewed the entire pamphlet. It wasn't listed in side effects, so I had no idea. I got a new antibiotic, but now waiting to hear back to see if it could affect the outcome of my puncture. Oh, and the stupid medication caused a gout flare up, too. I seriously have about had it. I keep telling myself that I'm just overwhelmed because I'm sick and in some sort of flare up, but seriously starting to feel like I'm pushing a boulder uphill and so over it. Sorry for the vent, but I know you all understand and hoping someone has some insight.

Thanks in advance!
Julie
Back to top Go down
Sophiasmom
Admin2
Admin2
Sophiasmom


A perfect storm Empty
PostSubject: Re: A perfect storm   A perfect storm I_icon_minitimeMon Feb 18, 2019 1:43 am

hi Julie;
I'm so sorry for all you are going through!  I'm sorry I haven't been on the site recently, we have had one snowstorm after another and it covers my satellite dish so the only reason I have wifi now is because I am not home.

I completely understand your frustration.  medicine is so compartmentalized that the specialists have trouble seeing the forest for the trees.  was it a fluoroquinolone you took?  this has been shown to cause IIH so it's definitely a no-no for us.  I hope you got off it fast enough to prevent anything permanent.  I have not heard of it causing gout, but it wouldn't surprise me because these meds are like chemotherapy and chemo is known to cause gout from breakdown of cells.  the other thing that is associated with gout is OSA, so make sure yours is properly managed.  it gets worse with age so every few years you need to reassess.

HgbA1C reflects what your blood sugar levels have done over time.  so if your fasting glucose is elevated and your HgbA1C is not, it means that you are not spending long periods of time with hyperglycemia.  I don't see how this can really be diabetes, although it is abnormal glucose tolerance.  if I get a chance I can try to research this for you but things have been pretty overwhelming lately..... either way, your insulin is not functioning properly, to keep your glucose normalized.  more than likely it is related to insulin resistance, related to your weight.

have you considered gastric bypass?  this might help where other methods have failed.  I too am struggling more with my weight as I approach menopause.  the same diet that yielded me a given weight 2 years ago, no longer works the same. for me the key is reducing carbs, and eating as much fruits and vegetables as possible.  not there right now.....  organic and vegetarian isn't necessarily low carb.  

I also have wondered how much of my issues are related to pituitary chaos caused by ICP, and I don't have MRI evidence of empty sella.  there is evidence it can be present hormonally without MRI findings.

in terms of thyroid, make sure your TSH is 1.0 give or take 0.5 or you will probably have issues.  the labs report up to 5 as normal and it's absolutely not.  the docs don't think about it.  if you are only on T4 replacement then you might consider going to a T4/T3 combined regimen.  I had difficulty with my weight after my thyroidectomy until I got on T3.  my T4 was reported at 1.1, well within the normal range, last week, but that is too high FOR ME, and I was having anxiety and palpitations.  you may want to look through your labs over time, keep a diary of your symptoms, and try to figure out what YOUR normal free T4 and T3 are.  I had to take over complete management of my thyroid function because my docs were just making me sick.  I would hate to think that your weight gain may be related to poor thyroid management.  

Deb
Back to top Go down
medmisfit
Admin2
Admin2
medmisfit


A perfect storm Empty
PostSubject: Re: A perfect storm   A perfect storm I_icon_minitimeTue Feb 19, 2019 8:22 pm

Thanks Deb! You definitely hit on a lot of points that fuel my frustration. The biggest right now is none of my physicians are on the same page and they all think their specialty should be most important. Something has to give and right now I feel like it's my sanity..lol.

It was doxycycline that caused the increased ICP and I assume the gout flare up because joint inflammation was listed, but I've also developed boils, my rosacea is acting up, and feel like my immune system is just saying "f- off". 

I was in remission with IIH when I had my hysterectomy at 30 and it came back with a vengeance. I had the lumbar shunt implanted the next year and gained the weight within the next few years, so I've been trying to lose it for almost two decades. I have lost 50lbs at least a few times, but can't get any farther. I have history of anorexia and bulimia, so they don't recommend the surgery or any restrictive diets. I did the best when I ate 51% raw, whole food diet and juiced regularly. Of course that's when my glucose started to soar and I was having gout flare ups all the time. My ICP increased again, and I ended up having three surgeries within nine months. The last one being VP Shunt implant. I really had hoped that would fix everything, but still have daily headaches in one form or another and was basically told that this is as good as it will get for me.

I'm tired, I'm depressed, and I'm sick of having to think about everything all day every day. I'm over all these appointments, medications, tests, and logs. I am seriously considering a medication holiday because I think they're just treating symptoms and have no idea whether it's a disease or side effect that they're treating. Every specialist thinks their modality is the most important and should be the main focus of my treatment, while I'm just trying to survive. I have definitely hit a wall and just trying to figure out how can I take a vacation from myself. Reiki and massage used to help, but now it's just one more appointment and expense. I know you all understand and I'll get over my pity party once this flare up ends..
Back to top Go down
Sophiasmom
Admin2
Admin2
Sophiasmom


A perfect storm Empty
PostSubject: Re: A perfect storm   A perfect storm I_icon_minitimeWed Feb 20, 2019 10:45 pm

sleep apnea can exacerbate all these things so make sure that is being addressed properly.  easier said than done.  any doc who put you on doxy should be reported to the medical board, that is just incompetence and malpractice.  doxy can cause IIH, what was he thinking?  oh wait, he wasn't.......

I totally get your frustration.  I hope you can find some way to get past all of this.
Back to top Go down
medmisfit
Admin2
Admin2
medmisfit


A perfect storm Empty
PostSubject: Re: A perfect storm   A perfect storm I_icon_minitimeMon Mar 04, 2019 5:46 pm

I had opening pressure of 28 with yesterday’s LP. My ventricle has collapsed within the last year or two, so I’m sure it was just a matter of time. I do tend to gain weight and get depressed when my pressure is high, but I didn’t have the debilitating headaches and missed it. I guess the self-doubt runs deep after years of being told this was all in my head because I was fat and depressed. When my pressure is normal I tend to lose weight and am not depressed, so this was a little validating. Just a reminder to pay attention and trust what are bodies are telling us!

Deb, I may take you up on help with my thyroid once this gets straightened out. A new sleep study is also on my endocrinologists to do list, so maybe 2019 will be the year we figure this out! Thanks for listening..   
Back to top Go down
Sophiasmom
Admin2
Admin2
Sophiasmom


A perfect storm Empty
PostSubject: Re: A perfect storm   A perfect storm I_icon_minitimeThu Mar 07, 2019 4:32 am

bummer.  28 is not fun.  did they adjust your shunt?
Back to top Go down
medmisfit
Admin2
Admin2
medmisfit


A perfect storm Empty
PostSubject: Re: A perfect storm   A perfect storm I_icon_minitimeThu Mar 07, 2019 2:05 pm

It’s already set at 12/120, so waiting to hear next steps.
Back to top Go down
Sponsored content




A perfect storm Empty
PostSubject: Re: A perfect storm   A perfect storm I_icon_minitime

Back to top Go down
 

A perfect storm

View previous topic View next topic Back to top 

 Similar topics

+
Page 1 of 1

Permissions in this forum:You cannot reply to topics in this forum
www.ihaveiih.com :: Living with IIH ::   :: Group Huddle-
Jump to:  
DISCLAIMER This group is not managed by anyone in the medical profession, but by people who are either affected by, or are closely connected to IIH. Information provided on this site is meant to complement & not replace any advice or information from a health professional, users and members are reminded that medical professionals should always be consulted in all aspects of health needs.
Protected by Copyscape Web Copyright Protection Software
Top Disability Websites
Create a forum | © phpBB | Free forum support | Contact | Report an abuse | Forumotion.com