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Hello Dr. Diana I am a little confused about the diamox and CO2 level being at 22 and how this relates to alkalinity? In your video you said if you dropped below 22 CSF poured out your nose (which I have sometimes too). So I’m not understanding the relation between CO2 and alkalinity? Does this mean if I stay more alkaline I leak less? Or did I misunderstand the whole video which is likely because my brain doesn’t work sometimes through all of this.
Thank you for all your replies I appreciate it.
I take NUUN tablets for my electrolytes. And I’m waiting for a call back from my doctor to order the CO2 serum test and check my potassium levels. Is this what you meant by watch my electrolytes? Am I missing anything? Also I drink fresh lemon juice in water about an hour before taking the diamox.
I do better at around 2000 ft elevation. Not so good at sea level and I can’t go above 5000 ft without needing a trip to the ER. At higher than 6000 ft I can hear my skull crackling and I go pins and needles in all of my extremeties. It’s awful.
I am not having seizures at all. I believe I am having high inter cranial pressure. I have spontaneous CSF leaks out my nose that has been confirmed but no one wants to treat me for pressure. I am told I don’t fit the description I have very low blood pressure and I am not overweight. My doctor first said to take diamox then she said she wanted me to take something on a regular basis and that the diamox is not for regular use. My physical therapist contacted my doctor yesterday concerned that I am having Vertebralbasilar insufficiency but I haven’t heard back from her. And now I have a family emergency and need to travel I can’t go above 5000′ elevation without feeling like my brain is going to explode. So I am not sure why she gave me zonisamide and I’m a little uncomfortable about it. She did give me diamox for the trip to use at high elevations. I am at sea level right now and I feel like my head is going to explode so I am not sure what seizure medication can do for that? I was really hoping someone had experience with this drug and knew why I was given it?
I am having trouble getting a proper diagnosis as well. But no one has mentioned drilling a hole in my head. I did take a sample of what is leaking out of my nose to the doctor and it is confirmed spinal fluid. So that much I know, I am diagnosed with EDS and MCAS. So far the tests I have done are a CT scan of my brain, MRI of my brain with and without contrast and a CSF flow study, MRI of my neck and spine, X-rays of my neck with neck flexion, EMG and then I was sent to a cardiologist. I have heard of people getting a spinal puncture to test for inter cranial pressure but I haven’t heard of the skull drilling. Here is what I have learned so far. With High inter cranial pressure you don’t get relief from laying down I was told to recline semi upright by my doc, I personally take 600mg ibuprofen with a Mexican Coke and go see my Physical Therapist ASAP. I know that it’s high pressure when it feel like my skull is going to crack open and my teeth and face go numb and I get intense pressure behind and above one eye. The high pressure causes me to spring a leak out my nose and then I have low pressure from the leak. With that the pain is very constant and dull and awful. Not as intense as high but equally as awful. My doc told me to lay down and get plenty of fluids. My cardiologist told me to make sure to have plenty of salt for my POTS so I take NUUN tablets I use NUUN especially with low pressure days. And I still don’t have meds for this since all my tests came back normal except the CSF coming out my nose and symptoms of sometimes high and low pressure. So this is my routine and its debilitating but I have noticed I feel better when it’s sunny. I hope this helps:)
Finally my doctor got back to me today about giving me diamox. The message said, “diamox is for high inter cranial pressure and that I have low inter cranial pressure.” So I kept calling until I got ahold of someone and said that I have high pressure not low and that I have stopped having fluid coming out my nose last Thursday. So my doctor said that if they are not looking for a leak that I don’t need an MRI and that she has separate tests for inter cranial pressure to see if I need diamox. So on one hand I’m happy to not have contrast in my veins but on the other hand I’m still concerned about Chiari. And I’m also wondering why she needs to do a test (probably spinal tap) before giving me diamox. I have been misdiagnosed and given meds. So I’m not quite sure why such hesitation. I am also thinking if I pass up this MRI she may not order me another one. So I’m still not sure what to do. It’s hard having something wrong in your head not only is it super scary but my cognitive function is impaired for decision making.
My ENT doc said the pellets have dye on them and they are used to locate a leak. It’s a two day hospital stay and he said sometimes done in the O.R. My biggest fear is the MRI with contrast I have mast cell disorder and I take ketotifen. So I’m concerned about an allergic reaction to the contrast. I called my allergist she said that allergy to contrast is rare and to stay on top of my meds before going in but everything about me is “rare.” I have decided to not go forward with the pellets and I believe the leak is already healed I have no more fluid and the pressure has eased off. My MRI is this Friday I really am torn about doing it. I don’t feel good about it because they are looking for a leak that isn’t there so I feel I’m just going to risk a reaction and I find MRI’s to be awful. The only positive in having the MRI I can think of is, I have suspected Chiari for a long time so this would answer that. I would like some insight and some advice I’m not sure what to do and I don’t want to make a bad situation worse.May 30, 2016 at 2:53 am in reply to: Extreme Hair Loss! – POTS MCAD MTHFR EDS or STRESS? #5952
When I moved to a colder climate I started losing my hair. I also have hypothyroid and mast cell but I definitely feel that vitamin D is a component in this and mold too. It has been a much warmer year this past winter and my hair has grown a lot. More sunshine equals more vitamin D and less dampness equals less mold. Just something I’ve noticed in my life.
I did start reading the book, I look forward to finishing its a helpful read so far.
My mother has not gotten an EDS diagnosis. She is extremely sensitive to everything she eats, smells, and touches. I understand that not everyone who has EDS is exactly the same. I am also not sure what my mother considers flexible and unfortunately there is no way to tell because of the extent of her injuries.
I hope you find answers, good luck.
I called kindle support and got it figured out. I had to do it through my PC because it would not open in my iPad. But I finally got it to work. Yeah!
Thank you for responding. I too have constant pain in my head and neck and in my right shoulder. My pain becomes intolerable during the winter months and during barometric pressure changes. I lay down most of the time to control the pain and I keep my head slightly propped up. It feels like my head is going to explode from the pressure and the brain fog is terrible. I am bed ridden majority of the time from pain. I appreciate you sharing that you feel your life is at risk due to the pain. I feel that way all the time. I can’t imagine this much pain is not life threatening.
My only advice is to see a rheumatologist or an orthopedic doctor if you suspect EDS. A rheumatologist is the appropriate specialist for EDS so I would start there.
Definitely tell your neurologist about your symptoms and things you have read. From my own personal experience, I feel like the more info I can give, the closer I am to getting better.
My mother has so many symptoms of EDS but she’s not hypermobile. I feel like she has some variant.
I wish I could be more helpful, I hope you feel better soon.
Thank you for the advice Dr. Diana and Barbara that was very helpful. I went to the store today to get Epsom salt and next to the Epsom salt was this bath stuff I used to use about 15 years ago when I had a very physically demanding job. I would come home after being on my feet all day with bruises and spider veins and in terrible pain. I had no idea this was abnormal. But I used to bathe in this bath stuff and it would make me feel so much better. So I read the label on the bath stuff, it’s just Epsom salt and scented oil! I laughed out loud my old home remedy was Epsom salt and I had no idea. 🙂