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Hi there.
I started having issues right from birth. They were unable to find a formula I could tolerate. From there it was chronic respitory infections and pneumonia every year. I started gaining weight rapidly, despite being active and having a normal diet starting age 6. Age ten I started having severe allergies that came out of no where. Sneezing 100 times in a row, itchy watering eyes, you name it. Allergy shots, medications, bed coveres, tiles floors, nothing helped. By age 12 I had gastritis, and at age 13 I started getting unexplained hives and physical uticaria. I missed a whole year of school and not one was able to diagnose me. At 15 I was diagnosed with PCOS and weighed 300lbs. Between 17-18 I lost 100lbs and started having the POTS issue. I was told I would grow out of it. I would pass out for no reason, after warm showers, heat intolerance etc. I am 31 and still have not grown out of it and if anything it has gotten worse with deconditioning of my body over the years. I also had a lot of joint issues and cracking and snapping. Recently this year I was diagnosed with intercranial hypertension as my eyes started to bulge and I was admitted to the hospital. They did a lumbar puncture and put me on Diamox. They also found a cyst on my pituitary gland. I have had pulstile tinnusitis for six years, but not one took it seriously. Recently I have been having issues with my hips dislocating and my joints in my back going on when I simply breath. I seem to be in a bad flare with my histamine intolerance as I am turning red, flushing and staying red all day. I don’t know what to do or where to start. I have an apt with nuero tomorrow, referral out for nuero ophthamologist, nephrologist, cardiologist, allergist, endocrine dr and rhumeatologist. They are also testing me for lupus and MTHR since my dad has both (at my request.) I am willing to advocate but not quite sure where to start to ask with testing. I am the mother of a two year old and a business owner and i am so exhausted and overwhelmed with all the information I am finding. Any info or gentle guidance would be beyond apprechiated!
Hello, our new friend! It sounds like you are in good company here. It sounds like you have some good appointments set up to get you started. Have your doctors tested you for mastocytosis? I’m glad to hear you are being tested for autoimmune disorders. Do you still have POTS? Do you have EDS, perchance? If you still have POTS, did your doctors determine if it is neuropathic or non-neuropathic? I think that may be important to help you head down the right path… Hang in. 🙂
As of this time the Dr’s who are treating me don’t know what POTS really is or that I have it. I am meeting much resisitence and feeling desperate at the lack of time that I have because I am getting worse at such a fast pace. I am in the hospital right now under cardiac observation but they don’t any to consult my nuero, my pressure is back up high and dc’d diamox the other day because I kept breaking out and I was feeling so sick. Prescribed lasiks but I have not taken it yet. The diomox had not really helped and the pressure built back up. I had an LP on Jan 4th and look like I need another. I’m having visual changes and am concerned for my eye sight. I have not been diagnosed with ED but I suspect i have it due to the way my body is slow to heal and the odd scars that have shown up after my last surgery. Took months for the incisions to heal, they kept splitting open. Not to mention that my chiro dr keeps taking about how hyper flexible my joints are as they keep popping and clicking so much. I’m having worse issues with my POTS, having a hard time keeping my temp regulated, out of breath a lot, suddenly Ian having serious gastric deltas when my water and food are taking hours and hours to go down, making me feel so I’ll or that I want to throw it back up. I’ve lost 30lbs since the new year…but since I’m obese they are not concerned actually of course they feel that, that’s why his happened. However I know that it was from trauma being rear ended severely at the end of auagusr. My neck snapped, and it hurt so bad since then. Not long after the tingling and numbness in limbs started and then everything else followed suit. I feel that I have had high pressure my whole life but it was not out of control like it is now. When I get home I am going to start myself on the Z’s. I’m trying to see a local PCP that has multiple dysautonomia patients so I won’t have to keep educating dr’s on what it is for them not to even be really sure it exists. I was reading your book again (having a hard time concentrating through pain) and it said hat if they can never get down to the issue that’s causing the csf fluid to keep rising that my body will keep having the same response correct? If diamox is not helping it and I’m degrading so fast I’m just not sure what to do. Also meeting so much resistance from doctors that it’s heatbreaking. I’m being treated as almost like I’m non compliment or something when im trying to just advocate for myself. Also waiting on the results from my lupus anticoagulant since my dad has lupus. They have not done and MRv or a positional MRI , things that I feel should be done to rule out things. I have also had pain along my jugular vein but people are ingnoring what I’m saying. I bring up mast cell but again they don’t take me seriously. It’s also suggested in your book that LP’s are not good but my pressure is so high I don’t know what else to do, my eyes are starting to bulge. I get a spinal migraine from when they did it last time too so that concerns me. I still have th pots but i don’t know if it’s non neuropathic or not. Although recently my pots symptoms as with everything else have been amplified. Sorry if I am repeating myself it’s 3:30 am and I’m so tired but can’t sleep and keep reading your book to try to grasp everything so I can try to help myself. Thank you so so much for your reply and all the research you have done.
Two more things lol. The mri they did was after the lumbar puncture and not before it, so I’m not sure how valid it is. Also, I have wetness in my ears sometimes but not sure how to tell if it’s cf fluid leaks or not. My O2 stats have been lower than normal as well. Low to mid 90’s when I am usually at 99 or 100.
I think I speak for most of us here saying that we’re so sorry you are suffering so much. 🙁 I think most of us are also familiar with our doctors not understanding our conditions (although I DO wonder what part of the country you are in, if there are bigger centers somewhere?). It sounds like you need to deal with your ICP pressure first and foremost — the rest can wait, am I right? No one here would dare venture a guess as to whether or not you need to have a VP shunt, but if I were in your shoes, I would be working to be certain they exhausted non-invasive treatment first. Good — you have the book, so you have the information about various potential reactions to Diamox — which are allergies, which are normal side effects, which are adverse reactions, etc. Did your doctors make sure your CO2 levels and electrolytes were OK for Diamox? If all is OK, Diamox plus Lasix may give you more help. Some doctors will go with octreotide for a few weeks. Sometimes steroids are used. The thinking is that if your ICP spiked for some reason, could it go back down again, thus eliminating your need for a shunt. If so, what can be done in the meanwhile? Is your vision in danger, is that why they want to shunt? Do you have papilledema and are they certain your eye bulging is not from Graves (or any other cause)? If they are worried about your vision, did they test your fields to see if you were showing hints of damage? If so, did an ophthalmologist think that optic nerve sheath fenestration is an option (invasive, but less invasive and fewer risks later when compared to a brain shunt)? It can be hard to push for answers, but it may be important. Big, big hug…
Another thing is, I’d be having Epsom Salts baths or footbaths, as often as I could manage, so the body can absorb Magnesium, if it needs it (which used to be used in the olden days, to bring down raised intracranial pressure). Just a thought
Barbara
(UK)Sorry for not responding sooner, it’s been a long ride. I got my official DX of MCAS on Friday. DR also said he thinks I have EDS, I also got my offcial DX of POTS. I noticed that my intercranial pressure only goes up when I eat high histamine foods. I am at a point now though that I do basically have an ANA reaction to almost everything. My Dr started me on double doses of zantac and zyrtec like your protocol and it’s been such a huge help. I didn’t start it before because my allergist wanted me to get my tests without the meds but I could not take everything I was going through anymore. I have to tell you that I was having back to back ana reactions and then the first night i took it I slept for 12 hours!!!! The biggest impact is that it opened up my airway so I could breathe. My nails were purplish and now they are pink! With that said I still have pulstile tinusitis (which i have had for six years) and some pain in my head (not nearly like it was) I also have pain along my ear and the back of my neck. One side of my face is a little more swollen then the other. Wondering if it is bells palsy or if I had a stroke :/. I see my nuero this week and I have all this new information to give him. At this point he doesn’t think I have intercranial hypertension anymore because my last LP opening was a 17, however…I feel the only real accurate way to measure pressure would be ICP bolt monitoring. I am unable to take any diuretic, I have reactions to them and if you have MCAS they are on the do not take list. I am located in the Tampa Bay area of FL and have been seen at Bayfront however, I am thinking about being seen at Tampa General as they are a bigger hospital and rank higher with their nueroscience department. Do you have a suggestion to a nuero or a nuerosurgeon I could contact that has seen patients with our exact issues? Even if it’s only for them to converse with my doctor’s to better get an understanding about what I am going through or how to help me. I am also willing to travel to another state as well. I would like to not have a shunt but I would like to try to figure out if it is necessary or not at this point. I have lost 62lbs this year, just by eating low histamine, no gluten or dairy. I have spent most of the year in bed, so its amazing I lost so much. Also shows how much my body was inflamed. I have also brought my sed rate from 49 to mid teens, just with diet. I have also incorporated epsom salt baths in because I found out my MTHFR mutation that my body does not detox properly. Last year when I got an ultrasound, they mentioned that it looked like my jugular was almost totally closed. Then I see the pictures in your book and how they look and it makes me wonder. I am trying to get a dr to revisit that, but no one will because my MRV looked fine. Do you think that is something of possible concern. I just don’t know where to go at this point because dr’s seem to be so lax about everything or uneducated. I “look fine” to them but inside i am haywire.
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