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Everything posted by brethor9

  1. me too! I have to drink tap water at room temperature or I get sick........
  2. I have noticed this too since the onset of my illness...but I also had a partial hysterectomy in 2008 so I think its most likely related to hormones. Luckily mine is super thick and I can wear it super short.....my hubby actually hates long hair on me...thank god
  3. yes me too!!! I hate drinking any fluids and feel worse after. I have actually completely lost the urge to drink. My specialist says my thirst receptor does not signal my body to drink properly because of chronic dehydration. My body is used to not drinking now...this was the reason we started IV infusions but I have had bad reactions to them so all I can do is force myself to drink
  4. yes I also get episodes of the shakes or tremors....I actually went through a very severe episode recently after getting a saline infusion of all things! The nurse took a video and it is posted here on the forum under 'Scary Pots Attack' it was really freaky...not sure if it is similar to what your son is experiencing? my auto specialist was not sure what caused it but after being diagnosed with MCAS last week that specialist thought it was a reaction.....
  5. Thanks Hippy yeah it seems I just get one stabalized and then get a new one....you just can't win with this illness
  6. Hang in there Naomi ((((((huge hugs))))) yes I have been where you are and still have episodes.....the ones that scare me are my heart suddenly drops, my legs get really weak, lightheaded...it actually feels like my heart isn't pumping right and that is a new symptom I haven't had before. It gets so frustrating being told what we have isnt going to kill us but I swear sometimes it might have you been to your doc to get checked over? you could have something not even related to your POTS like a virus or something...... Bren
  7. Naomi: The immunologist I consulted with last week suspects that it is likely type 3; I have hypermoblie joints in my hands, feet, hips and spine (I am always throwing my back out over the smallest stupid things).........translucent, velvety smooth skin, very elastic skin, easy bruising, scoliosis, problems with anesthetics, gastro issues, joint and muscle pain etc...... and he said POTS or autonomic dysfunction can be the result of MCAS and EDS....so in my case we think the MCAS and EDS is causing the autonomic dysfunction
  8. Rox: I was diagnosed with POTS/Dysautonomia long before my new diagnosis....my immunologist explained the 3 syndromes are usually linked together....you can have just POTS but if you have MCAS.....you very likely have EDS of some form too. He told me it is usually life long and a long road to find the right treatment. I agree with Issie...now with my new diagnosis; obviously I wont be cured any time soon so I am just trying to stabalize my symptoms. I also have issues with compression....can only do it for a few hours then have to take it off because I start to ache. Issie; I think I may be opposite of you....I need mostly vasoconstriction.....the cold weather we are having now in Canada is such a blessing (except for the Raynauds now kicking in ......but I also think that certain areas of my body need to vasodilate at different times or I get pain; headaches, leg cramps...does that make sense?
  9. Hi All So last week I was seen by an immunologist who confirmed at long last that I likely have MCAS....still have to have a few more tests but he has already started me on the drug treatment protocol. Surprisingly, he also stated he thinks I have EDS type 3? that would explain my joint issues, stretchy, translucent skin and ropey veins, etc. I would love to hear from any EDS people as I have no idea what this syndrome is? connective tissue disorder is all he told me..... Also, Is anyone taking ketotifen for their mast cell treatment? I would love to hear the pros and cons? I know it is a mast cell stabalizer... Would appreciate any guidance and input... Thanks Bren
  10. Hi Pumpkin Sorry to hear you are struggling (hug)....I can definately relate to the bad fatigue and loss of energy right now....for me it comes in cycles. You may just be having a bad flare right now and really need some extra rest. Sometimes the worst thing you can do with POTS is to keep trying to push through the symptoms.....maybe push your doc to run some blood tests like iron, vitamin D, magnesium, B 12...these can all cause problems with fatigue. Also what is your sleep cycle like? alot of us have issues with sleep from the excess adrenaline, pain, tachy, bp swings...that could also be causing your fatigue. For me personally, I always have relapses after any kind of trauma that land in me in bed for a week or more...and the heat is killer our systems are just so fragile I guess.....feel better soon..... Bren
  11. good article bananas! although I have to admit the longer I have this illness it is becoming harder and harder for me to be graceful with people giving me unsolicited advice...like we don't struggle enough with the symptoms and then have to deal with all the back talk.....ugggh ;(
  12. me too! like Naomi it is my worst symptom and I have never been able to get rid of it yet
  13. I have used lorazepam for well over 2 years....1mg at bedtime no increase in dosage.....it has helped my symptoms ie nausea,headaches, sleep, stomach distress, allergic reactions....but I have suspected mast cell issues and they can help with that (that's another story .....I was also worried about tolerance and addiction but my dr said if it helps that's what is important. There is a difference between being addicted and dependant.....addiction is more used for recreation high, drug seeking, etc...many people are dependant on drugs to help them function ie; insulin, beta blockers; epilepsy drugs; anti-depressants which can also be horrible to get off of and "addictive" ....not pretty when you watch someone who has been on them for ten years try to get off.....anyway that's my opinion.... I say whatever helps you to feel even a little bit better is worth it
  14. I feel the same way in the heat ...... I rarely get outside...makes me way too symptomatic.... I always thought it may be due to being over vasodilated which causes worse pooling which then causes more adrenaline compensation (tachy) , dehydration, and unable to properly regulate temp changes which the autonomic system has control over. I live in Canada and Fall is finally upon us and I have never been happier to see cooler temps....although I don't do great in the extreme cold either never a happy medium is there?
  15. me too! I get dizzy just from drinking a glass of water lol.......I have always assumed it is a vagal response
  16. so happy for you Peace that must take some stress off for you.......oddly enough I was also granted disability on the first try... I sent over 65 pages of consult notes, tests etc lol......they probably thought oh heck I'm not reading all of this! Just give it to her
  17. Issie I totally agree with you about the anti histamines ....I reacted horribly to every single one....I actually asked my doctor if you could have a reaction to them? I finally managed to tolerate childrens claritin but had to titrate up very slowly. I think you are right that they are only another band aid really....you have to start at the mast cells themselves rather than just managing the symptoms. Even on the H1 and H2 I am still struggling which tells me that histamine release can't be my only problem. Is the quercertin just a supplement? I would try the nasal crom but it is so expensive and I have no drug coverage
  18. Libby....big hug! I am so sorry you had a bad episode.....my mom was exactly the same until I almost fainted in a store one day.....and she got to see my very purple and mottled legs....its sad that we wear our illness on the inside and that people don't take it seriously
  19. Spinner....My suspected mast cell symptoms are constant nausea, major gastro issues, dermographatism, several forms of urticaria, flushing, itching, shortness of breath, tachycardia, labile blood pressure, joint pain and swelling, headaches....etc, etc...... I could be mistaken but I don't think patients with other forms of POTS have the flushing issues or dermographatism, urticaria etc. In regards to the lorazepam oddly enough I have never had to increase the dose and in fact usually take less but my symptoms definately flare up bad if I dont take it....for whatever reason my system needs it right now. I have to be off all of my H1, H2 and other meds for immune testing on Wednesday and my system is already in serious revolt Dizzy....I hear you on the toxins; I am gluten, soy, dairy, nut, low histamine free but I still fight with symptoms....
  20. Nothing to be embarrassed about pumpkin its an honest situation that I am sure a lot of us experience; myself included. I think its a cause of adrenaline and oxygen control (heavy, fast breathing probably isn't best for us Potsies!) Like Katybug suggested try different positions that maybe don't stress your body as much and you get optimum blood flow...... I use to almost pass out....poor hubby thought he was going to kill me what helped me personally was taking a small dose of lorazepam or antihistamine beforehand.....or if you are taking a beta blocker you can always try a very small dose of that.....
  21. I have taken small dose lorazepam for over 2.5 years....it is a benzo like klonopin and out of all of my meds it is the only one that has helped put any kind of dent in my symptoms....I have suspected mast cell issues and it actually helps alot with those.....it doesn't do anything for my adrenaline issues oddly enough. There are quite a few mast cell articles that recommend using any benzodiazipine as part of mast cell treatment (they all bind the mast cell receptors). Dr Afrin (a well known mast cell specialist has talked about it in his presentations.) Klonopin I couldn't take...found it way too strong and sedating and worsened my lighthededness....interesting how each benzo is different depending on the individual. I am not concerned about addiction as it keeps me from being bedridden.....I think that is more important
  22. yes I have these issues too especially the sensation you describe bananas...the push pull sensation.....i also get the feeling like my feet are being sucked through the floor......it drives me crazy...and makes me feel crazy glad to know I am not the only one.....
  23. I never experienced this until I started taking a beta blocker......I only take a very small dose when my tachy is really bad...but I find for days even a week after just 1 dose I start having episodes of brady and skipped beats. This is why at times; I think is it really smart to be messing with the system more or will I just eventually make it worse by taking all these meds? The brady feels almost as bad if not worse than the tachy Bren
  24. mytwogirlsrox;I agree with you and one of my specialis'st said basically any rapid rise in heart rate from sitting to standing over like 10 bpm isnt really normal.... I mean makes sense right? all you did was stand up and your heart jumps like 20- 30 beats??? definately not normal......
  25. I found this definition in a article I was reading recently; "The hallmark symptom of POTS is an increase in heart rate from the supine to upright position of more than 30 beats per minute or to a heart rate greater than 120 beats per minute within 12 minutes of head-up tilt. so it isn't really based on immediate results....and another misconception many have including doctors is that BP isn't always an indication for diagnosis....you can have high or low blood pressure with POTS. Bren
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