brethor9

Anaphylaxing..... yes the saline was just regular saline and at room temperature.......the IV was set on a very slow drip but the fluids still ran right through me...I suspect reaction as the first symptoms were itching and flushing...especially my chest. Is that familiar to the mast cell episodes you have? we also tried a subcutaneous pump in the past and the area where they tried to insert the needle immediately swelled and turned red.....do you get the severe muscle contractions with yours? like every single muscle is contracting at the same time?

thanks guys I am feeling better today but still very shaky and incredibly sore from the severe muscle contractions. I have been taking lots of benadryl and zantac and it seems to be settling things down even more. My nurse theorized perhaps it could have been over vasodilation from the fluids and as soon as I stood up all the vessels opened which caused a massive adrenaline release to compensate and in turn caused the episode coupled with mast cell release. Sounds plausible I guess....the funny thing is that I wasn't really feeling horribly dehydrated before the infusion and I felt pretty good before the treatment. Needless to say I am not going to be having another one Sue....I don't think it was Potassium because I take in a lot of potassium through coconut water and other foods......but thanks for your input it is appreciated I am just amazed that the body can totally be out of control like that with no warning and then a few hours later it shakes it off (well after lots of meds ..) I was reading today about autonomic storms and wonder if that could be what I experienced?

thanks guys! unfortunately my specialist is away until the middle of August I have been asking around on the mast cell forum and some patients are saying it could have been a mast cell attack....who knows? with POTS its anyone's guess......I have small ones in the past but this one was by far the worst....I am worried this may be a new phase for me ....praying its not

Hi everyone! So I had a very bad day yesterday I had the home nurse come by to try to start me again for the saline infusions. In some of my recent posts I mentioned I have been having huge difficulty in getting these due to poor vein access...reaction to subcutaneous infusion...just on and on. Yesterday after some go around my lovely nurse managed to get a line and started the IV....this is when things got ugly....right away I started to itch all over and my chest started to flush, dizzy etc. The bag that was to take 4 hrs to go through wnt through in 1.5 hrs not sure why? At the end of the bag I decided I had to go to the bathroom (only to pee most of it back out even on the florinef) it would seem standing up added to a cascade of symptoms already winding up.....I could barely hold my balance, my head was pounding full of pressure, and I started having serious body tremors.....the event was so bad my nurse videotaped it. I have posted it on you tube hoping some of the masties and potsies could view to see if anyone experiences anything like this? http://youtu.be/HyCNt3mcET4 ....I would love some insight.....it was terribly scary!! Bren

I have problems with my neck and spine also.....I have scoliosis and some disk issues in the lumbar....when I throw my back out I immediately go into a major flare....I have always suspected there is a connection somehow

actually not that surprising that a male patient would get better or different treatment considering the medical establishment majority are men ;( I also received the panic attack crap they finally had to stop trying that one when my legs were turning purple for no reason and my HR was hitting 145....panic doesn't cause that

Alex if it makes you feel better I went through years before diagnosis with the same night time attacks you describe......since starting meds they are not as common at night as they were but the last 2 weeks they have been back full force.....sleep? what's sleep? lol

before I was diagnosed atleast twice a week by ambulance or the nurses at my work because I was passing out so over a span of 5 years alot!! In the beginning I was having terrible chest pain episodes, stomach issues etc and was so scared by the adrenaline surges I was sure each time I was dying.....after being diagnosed and getting on with a great specialist I never go...its been well over a year since my last visit and why bother most of the time they look at you like you have 3 heads

I don't take klonopin (makes me really dizzy) but I have had the same luck with ativan/lorazepam...I take a small dose .05mg 2x day for about 3 years (I have never upped my dose). It has been the only medication to help even a little.......and I tried every SSRI/SNRI out there with horrible paradoxical effects and I suspect they actually made my dysautonomia worse. One thing I did find out about benzo's through Dr. Afrin a mast cell dr is that they bind mast cell receptors so that may explain why they give some relief in my situation. To me there is a big difference between addiction and dependance.....technically people who have to take insulin are dependant so why should I feel bad for taking a medication that physically (not recreationally or for the high) makes me better? I don't stress about it anymore...I do whatever it takes to feel better

Hey Alex! I still have the severe pain but it seems to come and go in cycles.....I haven't figured out what is causing it. My specialist really doesn't attribute it to Florinef but I still think its a possibility as if I up my dose even a smidge the pain gets worse. He says steroids usually act as an anti inflammatory. The other thought he had was mast cell related....and honestly I have seen a bit of a difference after going on H1 and H2's.....have you tried stopping the florinef to see if it helps the pain at all? I have trialled it several times but only last about a week before the O/I gets so bad I have to start again....its such a double edged sword

for me pooling in the abdomen is exactly how Naomi described.....its just like a sense of loss of gravity.....heavy feeling like you just swallowed a water balloon or something....shortness of breath, tachy, bloating and if I stand long enough in this state my legs then start to go beat red/purple and feel like encased sausages...I hate that feeling....something I have found that has helped me a little is simethicone or bucospan...they are both used for gas but seem to help a little with the stomach pooling for some reason

I am the opposite actually.....very high adrenaline and feel horrible in the mornings and much more stable at night....I wonder why that is? sometimes I wonder if Cortisol levels could be playing a part.....

yes me too....makes me feel like I am drugged or drunk or something....

Definately me too! I always say if everything in my life just stayed monotone I would be much better....

Wow that is too interesting! Ativan is the only drug in its class I can tolerate in small doses....on it for 3 years with no issues.....even helps with a lot of my mast cell issues. I have tried all the other ones and have paradoxical reactions, ie dizziness, being wired, spaced out etc. I absolutely cannot tolerate any of the SNRI/SSRI's either...spent a whole year figuring that out ;( I guess even though these drugs are in the same class because our nervous systems are so unique we react differently PS found in one of Dr. Afrin's studies that he sometimes prescribes benzos for mast cell as they bind the receptors....Issie with your mast cell issues too bad they dont give you any relief Bren

I just say I have a rare nervous system illness that isnt life threatening but makes me really sick......

ugggh McBlonde I commend you for being able to drink that much Gatorade without getting a sick stomach.....I have such a hard time tolerating that stuff after awhile

I actually spoke to my home nurse about this yesterday......I am lucky she finds my illness completely fascinating and has become a great ali for me anyway she said its more the narrow pulse pressure that makes me feel so horrible rather than the BP and HR,,,,,I can have normal vitals but my pulse pressure will be very narrow.....I can actually feel the constriction in my body. Does anyone else actually feel the sensation of narrow pulse pressure? So yeah I totally sympathize....

lol you are right it is a horrible, alien sensation isnt it??.....I tried to describe it to many Dr;s prior to finding my POTS specialist....as soon as I explained it to him he smiled and said I know exactly what you are describing...the dose is too high and you are dilating too much causing even more pooling....weird right?? they put us on meds to stop the tachy but they also cause more pooling and low BP....sometimes I want to be put into a medical induced coma where they can just reboot the system and I would wake up cured

yeah I hear you.....sometimes I wonder how much more damage I am causing to the system by trialling and tweaking drugs all the time I tried about 10 different betas before I hit on one that isnt bad in a very tiny dose (bisoprolol) I take 1.25 mg on an as needed basis mostly. I find if I take it everyday I get the same feelings you describe (feeling of being sucked through the floor or I am moving through mud or something and I get really ****** mood wise lol)....it probably builds up in the system. I dont take it on days that my pressure is low or I compensate with an extra dose of florinef.....its such a balancing act isnt it? I really wish one of these treatments would hit and stick

so very true

I hear france has a great health system not to mention daycare and everything else I am in Canada.....our health care system used to be really good but its leaving alot to be desired now that everyone wants to privatize everything.....and the wait times arrrgh!!! you can wait between 6-8 months to see a specialist

McBlonde a lot of us on here have been able to attribute some of our symptoms to Mast Cell involvement....(twitchy cells in your body that release certain receptors ie histamine, heparin, leukotrines plus like 200 others into your system causing various symptoms ie flushing, tachy, low BP, nausea, shortness of breath, GI issues, rashes, joint pain etc) the benadryl is used to calm the mast cells (for lack of a better word). I myself only use it when I am having a bad flare and I can tell its mast cell related. Some people may use it to help with sleep issues too. Sorry if that was way more info than you needed or if you already knew that

McBlonde....like you I have way over-reactive responses to the dumbest things sometimes.....have you tried any beta blockers just in a tiny dose? they can help block the adrenaline and IMHO are a little more user friendly than the anti-depressants.....also if your dr allows you can take only when you are going through a bad episode. Magnesium is good for relaxing also. Its the adrenaline surges that are making you react with the crying and feelings of despair so try to remember that (its not the same as psychological anxiety although I am sure we are all stressed out with this illness) its a physical repercussion of your autonomic system not being balanced. Just out of curiosity the last time you were on Effexor did you have POTS? that might be the difference for why the med has changed in how it affects you? maybe since then your system is just a little more deregulated? what meds are you taking right now?

I agree with you Sue....I am tired of getting the band aid solution to treat this symptom or that symptom....I really wish these specialists would push harder for a etiology to this illness....I also have curvature of the spine....loose lumber joints..locked pelvis joints...and neck issues. I have always from day 1 said that my spine affects my symptoms somehow. Some of my worst bedridden flares came right after any type of stress to my spine.......