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Everything posted by brethor9

  1. Spinner I get the exact same thing you are referring to! My specialist just says it is part of the dysautonomia.....it worries me sometimes because my BP can spike really hard and fast sometimes and I worry about strokes....but he said its only if it was prolonged that he would be concerned.....like you i do everything slowly Bren
  2. I was a ward clerk in a very busy cancer clinic.....exposed to lots of stuff.....I still wonder if that all wasn't a factor somehow....had to stop working in 2011....no forseeable return date yet
  3. oh boy yes!! right after having my second saline infusion.....my mast cell specialist thinks it was a reaction and my autonomic specialist says it was a storm.....either way it was nasty!! I actually posted about it here on the forum under 'Scary Pots Attack after Saline Infusion and posted a video my nurse took (if anyone is interested in viewing)....it was very scary and painful....it lasted for over an hour and the only thing that brought it down was benadryl, 300mg of zantac and 1mg ativan....I used to get smaller ones before starting medication also..... haven't had another of that specific intensity but I have never tried getting infused again after that freaky stuff! Bren
  4. yep happens with me too! and you should never feel embarassed about something natural.....its not like you can control it my husband use to say " my wife is almost passing out during you know (to the specialist) and it certainly isn't because of my performance" lol it can be scary but my episodes are much better now that I am on a medication protocol for MCAS....... but I agree with Issie I don't think it just happens with mast cell issues......I was also tested and showed high catecholamines so I think anytime I have an event that adds more adrenaline my body just can't compensate and it crashes. Perhaps next time you could try taking a small dose of antihistamine and see if it helps? or perhaps a dose of your ativan as that will take the edge off your system......hang in there hugs Bren
  5. I have simplified my explanation as saying I have a rare nervous system illness that keeps my body from functioning normally (like MS but not fatal). I don't even try to explain the mast cell stuff....its even harder lol.... most people think its just allergies and cant understand how it can make you so sick..... yeah just allergies Bren
  6. In my own case my symptoms started about 2 years before being put on ativan and it actually helps my dysautonomia and POTS/MCAS......which is strange and I have never had to change my dose to get more effect.......I completely crashed after having a hysterectomy/ appendectomy....so maybe it really comes down to any kind of trauma or upset to the ANS system .....I actually found the ups and downs of trying all of the SSRI/SNRI meds right after my hysterectomy probably made matters much worse also... and I have found recently it isn't so great trying to come off the Florinef either after almost 3 years ....to be honest sometimes I wish I didn't try any of these meds....I don't think any of them are necessarily good long term....(I have a friend who became very disabled after trialling cymbalta and lyrica).....so who really knows?..... I just want to get better no matter what the cost Bren
  7. I am still learning about EDS and the different types....not totally sure but you don't have to have stretchy skin or visibly hypermobility I think to have EDS. I have hypermobility in my hands but in alot of my larger joints also....like hips, neck, lower back are my worst. At this point I cannot do anything exercise related or I will react. Same as you I get the edema, flushing, nausea, etc......same with heat and cold....... I cannot do physio as anything like that just sends me into a huge flare up and relapse for weeks.....just isnt worth it. I can very much relate to the fatigue and body pain. I get bone pain so bad sometimes.....especially in my legs that I would prefer amputation and it can last for hours. So far none of my mast cell meds or POTS meds have helped with it......I just keep trying....what more can we do .......it wouldnt hurt for you to see a specialist about the EDS as it can cause a lot of pain...I know there is no cure but there is some treatments for it......also there is a good american mast cell website you should join...... mastcelldisorders.wallack.us......... they have been a lot of help to me regarding the mast cell stuff. Feel free to PM me if you have any other questions Bren
  8. Hi Science Girl You are the first person I have come across with this; I actually have the exact same problem as you only it happens whenever I aggravate my back. (I have a disc that pops in and out and indents the nerve root of my spine) I can send myself into a huge mast cell flare up just by putting my back out. I have no idea what the relationship is either. I havesuspected EDS also and know that my spine is very loose. In fact I experienced one of the worst episodes I have had in well over 6 months last night and I am now in a huge flare; perhaps brought on by a small amount of snow shovelling. I hate it and really wish I could find a specialist who could explain to me why it keeps happening? I also cannot exercise a lot because of exercise induced uritcaria (I swell up like crazy and get really sick.....just not worth it!)......I wish I had some answers for you but just wanted you to know you are not alone, and wish you the best....hang in there! Bren
  9. they may not be great for those with just POTS but are helpful in mast cell illness as they can act as a mast cell stabalizer so for me they have been very helpful.....I have not been able to tolerate any of the meds for just POTS ie SSRI/SNRI, mestinon, midodrine,beta blockers and now florinef due to pre-Cushings symptoms.....on the other hand since starting my mast cell protocol which includes a benzo; it is the most improvement I have had in 5 years so goes to show how every one of us can respond completely differently....... Bren
  10. yes I get this too and it can be quite painful.... I only get it on the right hand side......its very sharp shooting pain in the neck artery....my internist attributed it to BP spikes or possible carotidynia (inflammation of the carotid artery) he suggested to try a painkiller when it happens Bren
  11. lol Angela! you can have some of mine!! They are driving me nuts When I went to see the MCAD specialist he said also that the testing is quite inconclusive because the syndrome is complicated so he said he depends more on clinical history and symptomology and if the patient responds well to treatment. Methylhistamine urine is very hard to catch like Angela said and elevated tryptase is used more as an indicator for mastocytosis. You can have normal test results and still have MCAD. Some of your symptoms sound like mine....I have flushing, and bad chemical sensitivity and do not react well to alot of medications also (that's common just with Potsies) most of the meds for MCAD (H1 and H2's) are over the counter so you could always trial some if you wanted to and see if you have a positive response. In the 5 years I have been dealing with this illness I only finally started to get some relief after starting the MCAD meds so if you are having mast cell issues you should experience a positive response. Bren
  12. I have had major increase in my breast size also from the florinef and it was also causing pre-Cushings symptoms in me.....I have been on it for over 2 years so my internist decided it was time to titrate down the dose (I am already on a very small dose) he said it is a steroid regardless of the type and over a long period of usage in some people it can start causing these issues. Since I have downed the dose my breasts have started to go down and I have lost at least 10 pounds of the weight; the only downfall is a lot of my POTS symptoms are intensifying ....... as for your sleep issues....sounds like a mirror image of mine in the beginning....since starting my mast cell meds it has gotten a bit better....... Bren
  13. Hey Katy No I haven't been tested for any infections. At my last appointment the specialist just said my liver was enlarged and that I was showing signs of Cushing's so he wanted me to start titrating the florinef......but now with everything else I wonder if there isn't something else contributing...... I was shocked that 1/4 tab of florinef could cause that much damage but he said some people are more susceptible over time........but now with these sleep episodes I just don't know what is going on.... think it may be time for me to see an endocrinologist........
  14. I have been having my episodes since 2007....just came on out of the blue but for whatever reason reducing the dose of florinef has made them much worse......I have also noticed during some of these episodes I get a really sudden dry mouth and severe leg cramps too....I thought maybe dehydration but my fluid intake seems okay....it is a mystery.....I know recently I was diagnosed with an enlarged liver too and I am terrified that this could be a tie-in somehow? This is one of those times when I worry that I am ignoring something and just attributing it all to dysautonomia
  15. WOW Peace that is weird that you also reduced your florinef and are experiencing these episodes. Mine have definately come on fast and furious since lowering the florinef.....I am wondering if it could be an adrenal thing? I was told to lower the florinef because i was showing pre-cushings syndrome....so now I am wondering if being on the florinef so long has somehow messed with my adrenal function? Bren
  16. problems with anesthetic can be an issue with mast cell also. I have always had a hard time with these and any type of opioids. When I had my son, I had 3 epidurals, a local and finally a general delivery because nothing would work; doctor had never seen anything like it......I love being an enigma ...... NOT! Bren
  17. Oh Ash....my heart goes out to you!! Big Big Hug! I have been where you are and can definately sympathize with everything you are going through; symptom wise and doctor wise ;(........ I think mostly everyone on this forum has had horrible run ins with docs in the ER. Unfortunately most docs you run into are going to have no idea what POTS/Dysautonomia is much less know how to treat it! One doctor in ER actually told me they deal in trauma and easily treatable issues not chronic illness maintenance and that was my GP's responsibility ;(.......... After awhile I just refused to go to ER any more....it just stressed my system even worse and they wouldn't end up doing anything for me. Do you have a POTS specialist besides your cardiologist? who diagnosed your POTS? I was able to get in-home saline infusions ordered through my specialist but I know others who have gotten them ordered through their GP or another specialist. Is your cardiologist aware of how much the sailive IV's help your symptoms? perhaps they would be willing to order them for you so you don't have to keep going back to ER. Also, if I ever have to go to ER I make sure I carry copies of my specialists consult notes with me so I can just give them to the ER doc and I don't have to explain (and they don't give me that look like I am making it up .....).......hang in there sweetie! hopefully your cardiologist will be able to help you Bren
  18. glad to know I am not the only one but hate that you guys are experiencing it too! Peace I know what you mean.....its like after awhile the sedation feeling wears off and I am completely awake again......what the heck is that all about and what the heck is causing it? I know its not a presyncope episode and I don't think its a sugar issue the only thing I am thinking is it could be a mast cell thing? but if you guys get them too maybe not.......all I know its freaky and I want to know a cause for it? Bren
  19. BUMP...... has anyone been experiencing these sudden sleep attacks or forced sleep? I recently lowered my dose of florinef (due to possible pre-Cushings and enlarged liver issues) and have noticed they are coming on again. They come just out of the blue...no rhyme or reason.....it is not like I need to lay down and sleep but feels more like I have been hit with a tranquilizer dart or the flick of a switch. I have been continuing with my mast cell protocol but wonder if the florinef was keeping some type of reaction under wraps? The episodes are scary because not only do I feel like I need to sleep but my HR drops and my breathing gets slow also...... so very weird..... Bren
  20. Hang in there girl!.....big hug....... I think we have all been through this since getting sick with this illness. If not with a spouse, then with family members. It is a lot to handle especially when you are trying to deal with your body completely losing its ability to co-operate with you I finally decided after years of putting myself last the only way I would be able to deal with this illness is if I started being a little more selfish. Its survival! my hubby, friends, family were not very happy at first but as time has passed and the more information on my illness they learn things are starting to get better. I still on many occasions have to remind everyone that just because I am not crawling to the bathroom any more does not mean I am cured....... yes I have changed but in some ways for the better....I just don't take the crap any more Bren
  21. yes I get this and like Naomi, I get pooling in my legs, arms and hands....the worst for me is mornings when I wake up and it feels like my chest is full of fluid...I assume you can get thoracic pooling also if it can pool everywhere else........ Bren
  22. actually when I first gave up gluten I was sooo sick for atleast a couple weeks if not more. One of my friends who had gone through the experience years before said it was detox/ withdrawal and that it would get better once your body got used to not having it. For me and my severe stomach issues it did seem to eventually make a difference. I realized also that it was more of a wheat issue for me than gluten so I am able to have some gluten but not wheat....when I eat wheat my system can tell instantly and will feel horrible for several days after until it clears out of my system again.........
  23. yep you are right issie I am going through all of this right now. I have several different specialists doing different skin biopsies and an oncologist is doing the bone marrow biopsy for the mast cell ..... not fun! so glad to hear how you are improving Issie if anyone can do it, you can .....curious though how are you managing such a restrictive with the mast cell issues and your trigger foods? Bren
  24. WOW Tinks! that's a lot to take in isn't it? I am also being checked for this.....just had my MRI last week. My specialist told me that it can cause dysautonomia so now I am just waiting to hear about the results. Have they told you anything other than you have Chiari 1? I have read about patients who have had the surgery and their symptoms completely resolved after so that is promising. Hang in there.....big hugs <3 I know you must be feeling overwhelmed ;( Bren
  25. yeah Seattle I hear you.....I used to love exercise now I pride myself on the days I am able to cook dinner or go grocery shopping futurehope; I think my specialists are confident they have narrowed down my root causes...... I have been officially diagnosed with MCAS, presumed EDS Type 3, exercise induced urticaria, hot/ cold urticaria, severe secondary dysautonomia, OI/mild POTS, Gastroparesis (these are all likely being caused by the mast cell issues and EDS).....and just recently it is looking like I have some Pre-Cushings symptoms going on thanks to long term use of Florinef.....yikes right?? The nausea is likely a mast cell reaction to the activity.....seems like almost anything can be a trigger
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