Medication toxicity or Chiari?

[poosygirl]

I felt like I was on a boat for several months with dizziness and rocking sensation, sudden feeling of falling several stories or moving to the side. My left arm and leg were also getting weaker and the muscles felt numb on the inside. After failing my ECK Stress test - they stopped me after two minutes due to my BP being too high - I became very worried.

But I have done two things which seemed to have helped:

1. Been taking both Synthroid and Cytomel (T3) for my thyroid and the T3 was a little high the last few blood tests. My endo suggested I cut down on the T3 taking it every other day, but I was so afraid I would become even more tired he allowed me to continue at that dose. It had originally relieved my extreme brain fog a few years ago and I did not want that to return.

Anyway, it suddenly occurred to me that the dizziness and HBP could be from the T3. Stopped taking it altogether and guess what? The dizziness and numbness are almost completely gone! I am feeling so much better with more energy rather than less.

2. Went on a low-carb diet because I know it causes me to lose a lot of water. And I was afraid the dizziness was due to hydrocephalus, though my ventricles do not a appear enlarged on my MRI. (My doctor, GP, told me it is possible to have hydrocephalus without the ventricles being enlarged.) Anyone heard of that?

However, I know the symptoms of Chiari cycle, so I am hoping it was the T3 and not just a period of less symptoms. I have a CSF blockage and am thinking that if my BP is high, that might make the blockage worse???

Is it possible that CSF blockages can come and go naturally or at least get worse and better, perhaps depending on things like how much and which way you move around, exercise, diet, etc?

Also just wanted to put this out here in case anyone can benefit from the info.

PS: My doctor told me not to fly until I see my NS in June, but I have to fly out to BC to see my sister and dad as he is 89 with cancer and not doing well, so I've made the decision to go anyway and the tickets are booked for May 24th. My sister wants us all to drive to Vancouver for a holiday, possibly the last with my dad. Just hoping I will have the stamina to hold out. My neck, heachaches and fatigue have been pretty bad and the driving and flying worry me. I will use a neck pillow while travelling.

[selmaS]

  Most surgeries that had poor outcomes were due to not knowing of an EDS DX b4 surgery.....it can and does affect the outcome.

So if they do not check you for it or other related conditions they are not true Chiari specialists.

Hope that helps....

Please do add to that list and if you hear any no longer practice let me know...I can only go by what members tell me.....

No worries : )

[poosygirl]

Yeah, that list is pretty old, but I will add to it if I find anyone else trustworthy in Toronto. Dr. Ginsberg at St. Michael's hospital in Toronto says on his website that he treats Chiari, among many other things, so not sure that makes him a specialist, and as I said, he was too busy to see me even when I have a CSF blockage.

There is also a Dr. MacDonald there I hear is good from lynnbrook. I am seeing Dr. Cusimano, and will ask him about him. I will also ask him about consulting with the Chiari Institute. That is an excellent suggestion! There is such a need in Canada, it seems, for specialists. The NS's here should be eager to be educated!!! Though perhaps the lack of good results from surgery is discouraging. I wonder. It must be difficult for them.

Thanks so much for all of your help Selma! <3 <3

[selmaS]

  I am aware your means o get to a Dr may be limited but maybe the one you are sent to will "consult" with one on the list to get more info?? Worth  shot...here is a link to the list - ( it has not been updated for some time)
http://www.medhelp.org/posts/Chiari-Malformation/CHIARI-DRS-LIST-CANADA/show/1270605

I could not take HRT so mine was all natural ingredients and worked well.....

I hate drugs/meds too.

Thanks you too <3

[poosygirl]

I don't know where to find the list Selma. But it is up to my doctor to give the referral, that's how it works here. And I already asked him to refer me to someone at the same hospital who at least lists chiari as part of what he does. He did send a request, but that NS said he was too busy to see me in a timely manner and for my doctor to find me someone else appropriate, without giving any suggestions. His response was to send me to the first NS who, after seeing my test results, referred me to a geriatrician. My doc wrote him back, confused at this waste of time, and this NS finally agreed to see me. So I don't have a lot of expectations with him. Hoping he can at least refer me to a real specialist, but after the way I was first treated, unless it was a mistake, I expect very little help from him.

Also, I simply can't afford to travel to see a doctor.  Toronto is the furthest I can go.

I did look at the Beighton score and seem to fit some of the criteria, at least when I was younger and more flexible. My fingers are still bendy but not my thumb. I could easily touch my palms to the floor but not at all now. I could sit in the lotus position easily. It has always been more comfortable for me to sit with my feet crossed underneath me even at my age.

Yes, I am definitely hoping this NS will be able to tell me if my skull is too small.

That is odd with your bladder. I've noticed that whenever I have a hot flash I have to go urgently, and many times in the night. I used to take HRT, tried all of them but they didn't help so now I want to be off drugs. Take care Selma!

[selmaS]

  Did you look at the list of Drs for Canada...I know the list is very short but as we add to it, it will continue to grow like our USA one.

If you do have the testing make sure they know you are prone to allergic like reactions to many things so they are prepared.

Are you on a HRT or something like it to help with the hot flashes?I took an all natural product and only needed to take it a few months and I was done with it all....

Now my only issue I have with hot flashes are bladder or bowel related....sorry...but I was told I have a neurogenic bladder and when I have to go instead of the feeling I need to go I get hot or have pains....weird.....

Have you looked at the Beighton score to see if you fit any of the hyper mobility  signs? Keep in mind this is not the only criteria for EDS..

As for your condition being congenital or acquired....the Drs will be able to tell via a MRI if the skull is too small. Those other incidents may have triggered the symptoms to flare......

[poosygirl]

And I am almost convinced that I do have EDS Selma, but getting a diagnose is going to be a challenge.

I am suspicious that I was NOT actually born with a herniation. I could feel my brain swelling as a kid after I ate, due to sensitivities. Then I had three accidents, two with whiplash and one falling from a barn roof onto concrete hitting my head. One night I woke up suddenly after what sounded like a nuclear explosion in my head. Very frightening! It could have been a bad dream, but I don't think so. I wonder if that is when the built-up pressure caused me to herniate.

But anyway, I am pretty sure that EDS AND dysautonomia are causing my food sensitivities because I almost always do not feel well after eating--nausea, itching, fatigue, lightheadedness, headache, which goes away after an hour or so and I have limited the types of food I eat to very few.

I am concerned about this MIBI nuclear stress test next month in which I will also get injected with persantine to stress my heart without having to do the treadmill. Afraid I will get a reaction and it will cause me to be unwell when I have to fly out west the following week. Tempted to cancel the test, but then I won't know if my heart is okay lol. People do rarely die from that test but I guess there is no point in worrying. Or maybe I should trust my gut feeling not to do it.

It is hard to believe I could be this dehydrated. I drink 8 oz of water almost every hour and the extreme thirst can be very intense at times. Of course my hot flashes don't help, but looking back I had them in my twenties at times and that must be dysautonomia.

The NS I am seeing is not a Chiari specialist -- best my doc could do for me though he didn't try very hard. I will ask the NS if he can recommend a specialist, but I don't think we have anyone in Canada like at the Chiari Institute and I don't want to insult him either. I will not be letting him operate, that is for sure.

[selmaS]

  It's here...lol...I had that happen the other day too....weird how the post goes away then comes back......

Food sensitivity can also be EDS more so then Chiari, but they are related conditions....and EDS can also cause mal-absorption too.

POTS can cause you to be dehydrated....my niece is getting a saline drip for hers....but she is out in Yuma , AZ worst place for someone with POTS.

[poosygirl]

Ach! I posted a long reply Selma and it disappeared. Will rewrite it tomorrow :(

[poosygirl]

Thanks for the tip about the earplanes Selma, I'll look into it.

I am hoping to be able to stop my thyroid medication one day too. I have a lot of food sensitivities, as we chiarians tend to have, and believe not listening to my body was the cause; even though I was eating a healthy diet it was not what my body wanted. But I have read that a Paleo diet can help Hashimotos and since going on it have not felt inflammation in my thyroid which I had before all the time. So hopefully if I can stick to it long enough I can get off the Synthroid too.

You've got me wondering about the CSF stoppage now. Does anyone ever get a complete blockage that lasts? That would cause death I imagine. I passed out once in my teens. Was extremely thirsty in the night and got up for a drink of juice, my heart was pounding and I felt myself hit the floor. Never could figure out why but now wonder if that was chiari related.

I am always way too thirsty. Read recently that could be a symptom of dysautonomia which makes sense to me. Then you drink too much water and it dilutes your blood which causes nutritional deficiencies. Amazing how one thing leads to another and on and on...

[selmaS]

  Hi poosygirl,

Yes Chiari symptoms cycle....and it is so very important to look for related conditions....Hashimoto's thyroiditis is a related condition many with Chiari have....and guess what ,I was told to stop my synthroid after my decompression surgery as my levels leveled off and it was no longer needed....and related conditions can cause a lot of our symptoms.

This is one reason I encourage everyone to rule out ALL related and non related conditions  b4 surgery is considered.

CSF obstructions can change from time to time and in fact that is what happens with a drop attack.....the CSF flow is stopped completely for a second...and  returns flowing...but because of the stoppage signals to the brain stop as well and we can not control our muscles etc...and fall....but since it is such a short stoppage we may be aware of the fall but still unable to shout for help or reach out to stop the fall.

I was told to be careful of how I moved my neck bcuz of how I had a partially retroflexed odontoid and bulging disks and a certain way I moved may it more likely to cause flow stoppage again. For this reason my Dr said I could not drive. And since I did not have the disk repaired I still do not drive.

I flew b4 my surgery and did well.....if you have issues with head pressure you may want to try a product called earplanes.....many have said they work great!