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Everything posted by brethor9

  1. yeah mornings are not good I also don't sleep well at night due to pain, tachy, night sweats, etc etc......never feel good upon waking.....I think our bodies go through a lot during the night that we don't consciously notice and we also wake up dehydrated. First thing I try to do is fill up on fluids before even attempting to get out of bed. Bren
  2. WOW! I feel better knowing I am not crazy having this sensation in my head. It just freaks me out..... E Soskis: yeah Dysautonomia; the gift that keeps on giving!....I know what you mean I also worked in the medical setting and every time it happens I think stroke too! It is just such an alien feeling..... my home nurse was by the other day and noted my vitals were completely whacked and I ended up having another freaky episode (muscle spasms, shortness of breath, low BP, flushing etc)......when I told her what had been happening she said I was badly dehydrated and low sodium levels can cause these sensations along with the stupid MCAS. So after 3 bottles of gatorade, salt, zantac, benadryl, claritin etc an hour later I was back to feeling my regular crappy self I haven't had another head sensation since upping my salt and fluids again so hoping that's all it was Bren
  3. Good for you Rox I do think if you have primary POTS you certainly have a better chance of recovery. If it is secondary to an underlying condition ie MCAS, Dysautonomia, EDS you are in a more difficult position to recover. In my case my POTS was mild compared to the severe Dysautonomia and O/I and now diagnosed with MCAS and EDS. I have realized that I will probably never be cured but a girl can always hope and I agree with Kelly.....it drives me nuts when my specialist says I am stable in his note.....just because at that moment in time I wasn't all tachy certainly doesn't mean an hour later I am not flat on my back from a crash. I wish they would realize how sudden symptoms can change with this illness........ Bren
  4. you and I are so much alike Issie, its scary Bren
  5. with POTS though you can have wild swings and it isn't necessarily error related. I have very wide swings in my blood pressure in just shifting my body. My home nurse has made note of this as well as my specialists....I can have a swing of 30 points just from sitting to standing....its scary....my nurse says she can actually feel the change in my arm veins Bren
  6. Yeah I am the same as you Alex....I can literally almost pass out from having an animated conversation or laughing too much....sooo weird Bren
  7. I experience the same thing....in fact I wonder if this is not the reason why my body crashes so severely when I try to stop or taper down the florinef? An article I read said the chemical compound is almost identical to cortisol...definately has to be a co-relation. I have noticed how florinef helps with other symptoms like stomach pain, headaches, and how when I taper I get really moody and irritated and just feel horrible.....mmmmm
  8. So this is going to sound weird....has anyone experienced like a sudden dropping/shunting sensation in their head?? This happened to me today. I wasn't doing anything but sitting and watching T.V......all of the sudden boom its like my head inside dropped like an elevator and since that happened I am horribly dizzy, I have a slight headache, neck pain and a little nauseous. I used to get sort of similar sensations in the past (felt like I was having a stroke) but it has been a long time....it just came so out of the blue and I am not sure what caused it. I am not slurring, no numbness or severe pain....like I said just a soft headache....could it be the start of a migraine? any ideas? Bren
  9. Hi all So I am curious about Florinef and if anyone has noticed that it helps alleviate symptoms other than blood volume, dizziness and lightheadedness? I recently started the MCAS protocol and thought that it may be possible to start lowering my dose or stop the florinef and see what happens. I have tried to do this several time in the past and each time about a week after reducing or stopping I crash badly. It isn't related to blood volume though....I get incredibly moody and irritable, my stomach becomes intolerable with pain, bloating and severe indigestion despite being on tons of antihistamines and zantac. I start to have more muscle and bone pain and basically just feel horrible After a couple of days of going back on florinef all of these symptoms start to settle down again. I was reading that florinef is almost identical to cortisol (one binding receptor difference) and cortisol effects estrogen and progesterone etc so I am really wondering what this med does besides fluid volume retention? Has anyone else noticed any other symptoms it helps with and had difficulty stopping it? Bren
  10. I was told to keep it at a minimum.....to be honest I felt so horrible I wasn't wanting to talk much
  11. I have a copy of this presentation saved.......its been very helpful! I live in Canada and we do not have a lot of mast cell specialists hanging about...in fact most of the allergists here won't even acknowledge you unless you have full blown mastocytosis I finally lucked out thanks to another patient and my internist and got referred to a specialist who is now dealing with patients with MCAS-POTS-EDS and is doing a clinical study on the comorbidity between the three syndromes. After 5 long years I am seeing a little light at the end of the tunnel
  12. I have this happen too...my home nurse said it can happen with narrow pulse pressure and having low stroke volume.....she always laughs when I stand up because she can actually feel it narrow if she is taking the pulse manually....freaks her out every time Bren
  13. Sue; That is interesting! when I first became ill 5 years ago I was tested for Celiac and the anti-gliadin antibodies came back slightly elevated and I was told by one specialist that it was Celiac but then told by another that because it was only a slight elevation it was irrelevant. 3 years after that I had a colonoscopy and endoscopy which showed the reactive lymphoid aggregates and lots of inflammation but the biopsies were negative. I have had several other specialists say it still could be Celiac so I finally went gluten free anyway and have definately noticed a difference. Bren
  14. Sue; I am like you....constantly fight with gastritis (dealing with a very bad flare now ....) and on my last scope the pathology showed large reactive lymphoid aggregates but not H Pylori....my MCAS specialist feels this symptom is likely tied in to the mast cell issues....either way it is NOT fun!! Bren
  15. Hang in there Naomi....don't give up the fight! ......Big hugs Bren
  16. Me too!! Mine is just like how Katybug described....stroke and a heart attack at the same time......it feels sooo awful and I can't believe I can feel that on the edge and not have anyone realize it by looking at me...... I always think wow with all of these symptoms how would I ever know if it actually was a heart attack or stroke??...scary
  17. Hi Issie Issie WOW good for you!! I just started up again on the gastrocrom the last couple days after fighting off a vicious cold. So far nothing but headaches and stomach upset but I am game to continue on I know it gets worse before it gets better...I was warned lol! I have also noticed a difference just in taking the H1 and H2 and hope the gastrocrom helps even more....aspirin is a hit or miss for me...sometimes it helps and other episodes makes it worse. I find breaking my doses down more throughout the day is helping me even more....probably because it keeps everything level maybe? working in the medical establishment I was told you should never chase pain and it is better to slightly overlap dose times....I am thinking it can be applied the same for mast cell reactions? to always stay on top of it?? if that makes sense Bren
  18. yes me too! my specialist's say my case is very complicated and challenging also...I was just recently diagnosed with MCAS and likely EDS type 3 on top of POTS/dysautonomia....like Issie I have just recently started the MCAS protocol....... Bren
  19. yes me too....just getting over a really bad cold and my POTS has been really bad again
  20. I only take a .025mg of florinef daily and it helps me.....if I take anything over that I get worse head pressure and a headache... Bren
  21. too much adrenaline can cause the same symptoms....as having low BP and low blood volume......especially with Hyper Pots patients
  22. I was watching a program about this theory awhile also......its a neat concept and imagine all the drugs you wouldn't have to trial Bren
  23. and why do they ask you why you are there to see them after you explained it all when you made the appointment??? I feel like saying go ask your assistant or read the darn chart lol!
  24. Issie; so does all this explain why on the days I am having massive adrenaline issues caffeine actually calms my system down? I have never been able to figure that out....but on the days I am not and drink caffeine I get really symptomatic...weird Bren
  25. Glad to hear you are on an upswing Anoj I can totally sympathize with the frustrations you experience...I have been dealing with this for 5 years and still find myself explaining on a daily basis why I am so sick and cannot just be normal even though I look normal. Now when someone says oh you look good...I just say its the meds I am on not because I am actually better. They should call it the stalking illness....because even on my good days I am always looking over my shoulder (so to speak) waiting for it to creep on me lol....... hang in there and just try to enjoy your remission and don't let the negativity get to you...and remember you have people here who will always understand what you are going through Bren
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