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Everything posted by Kris4444

  1. That is what I said this morning to my Mom, that I need a good cry but I just feel numb. This has been going on for so long and just when you think you have one piece of the puzzle figured out the whole mess falls apart again and more tests are ordered and new drugs are tried. I'm just sick of it. I want to have some sort of a life back. The simple joy of riding a horse without the horrible things that happen during and after. I have lost many people who were once close to me because they don't know how to treat me or what to say. I try not to talk about the health stuff but it always comes up. My most exciting outings these days are to the hospital or doctors visits. It is starting to take over the world again and I don't want it to consume me like it has in the past. I just wish I had someone to talk to who understands. That is why these forums are so important. You guys get it. Thank you for reaching out to me Faye.
  2. I'm going through all that you've described currently. It's worse than ever before but I think it's because of starting some new medications. Hope you start to feel better soon!
  3. Hi, I'm feeling very vulnerable and overwhelmed right now and need some reassurance or at least some ideas to help me get my mind straight. Yesterday I saw a new neurologist who specializes in the ANS. I had gone to Mayo in 2013 and was diagnosed with a hyperadrenergic state due to high NE levels. After that I was diagnosed with EDS and also have autoimmune hepatitis, lupus, RA and scleroderma sine scleroderma. The new doctor took one look at my flushing pictures that I took of myself after exercise or riding and said I probably have a mast cell activation disorder and recommended seeing an immunologist. I had seen one without much help. He is planning on re-running a test to check my NE levels to see if they are still high and we will do that next week, but I'm really starting to freak out over how much is going on with me and how much medication is being thrown my way again. I fought really hard to get off meds and keep them to a minimum but my body is out of control right now and I don't know what to do. The autoimmune hepatitis is new so we are treating that aggressively with the pred and Imuran. They believe that the drug Humira caused the AIH. We are starting to wean off the pred and my rheumy wants me to consider going on another injectable biologic in a different class. I told him no and asked for other options, he mentioned Xeljanz, a new drug. This scares me. The doctor from yesterday wants to try a drug in the clonidine family for the hyper state and if I go back to an immunologist I will be put back on H1 and H2 blockers again which is MORE medication. I am so totally overwhelmed right now with everything that is going on and I don't really have anyone to talk to about it. I'm on so many meds already. Part of me wants to stop treating everything and just see what happens. I will continue to take the pred for the liver but what if after that I just don't take anything for the autoimmune issues for a while and give myself a break? Or maybe I should go the homeopathic route? Or maybe I should trust my doctors and just swallow my pills like a good girl? I really, really don't know what to do. Every time I turn around something else is wrong with this body of mine. The reaction I am having to exercise is very dramatic and I'm afraid it could be serious but I really don't know. When it is happening it is surreal and then when I'm finished exercising all heck breaks loose and the vertigo, flushing, sweating and shaking gets so bad I can't stand up and have to sit. It scares others around me and makes them very uncomfortable. In reading about anaphylaxis it seems that is exactly what is happening to me after I ride or workout. I have an epi-pen prescribed from the immunologist but I'm afraid to use it. I truly am so very overwhelmed with all of these diagnoses and medications and all that is out of my control. What do you do when you feel this way? I feel like I'm drowning...
  4. Thanks Dotty. I hate the shaking/tremors. I get very sweaty and flushed and simple things like making dinner now exhaust me. I'm looking forward to getting of this drug.
  5. I haven't heard of that drug looneymom. I will ask my doctor about it. They are starting me on Imuran on Monday and then we get to start weaning down on the pred again. I'm a little nervous about starting another med that suppresses the immune system but I guess I don't really have a choice with all that is going on right now. I'm glad you guys found something that has helped!
  6. If it keeps up I would speak to an allergist. There are blood tests they can do to see if you have an actual allergy to the cold are there are cryoglobulins (I think that's what they are called) that show up when that specific test is run. I tested positive once and then never again. Story of my life with everything lately lol. Hope your walk goes well!
  7. My doctor told me that these are pretty typical side effects to prednisone. He also said my dysautonomia symptoms would get worse. I have no choice but to take the drug for now. Waiting on a genetic test to come back that will give me to ok to start the Imuran. Once on that I will be able to start weaning off the pred. I will know more tomorrow after my doctors appointment.
  8. I've had spasms in my feet and legs before but never my hands. It's definitely from the pred. I've read low potassium can cause that too. I know they recently ran a panel to check vitamin D. Not sure if they checked calcium or potassium, it hasn't come back yet. I need to call my primary doctor to discuss the blood pressure.
  9. I have cold urticaria. I break out in hives about 12 hours after exercising in the cold. I saw an allergist for this. I have never broken out on my thighs as the areas that are affected with me are only the areas that my skin was exposed to the cold, so my face, neck and sometimes chest. The allergist recommended taking antihistamines, keeping myself covered and gave me an epipen just in case but I've never ad to use it. Hope they figure things out for you. Kris
  10. Hi, I was recently diagnosed with a double whammy of lupus and autoimmune hepatitis and put on high doses of prednisone. They started me on 40 mgs and I'm currently on 30 mgs. I'm having what my doctor says are "normal" side effects, shaking, sweating, muscle spasms in my hands that curl my fingers into my palms. When I exercise, even lightly, I get terrible vertigo/dizziness which make me feel like what is happening is surreal. I sweat through my clothes from light exercise and become very flushed. My blood pressure has been high 156/106 but no one seems concerned. I have insomnia. This just really *****. Is there anything I can do to counter these symptoms? My doctor has told me that I will just have to live with them and as we continue to lower my dose of prednisone, hopefully they will get better. The problem is that they plan to have me on the pred for a long time and take their time weaning me off of it and onto Imuran. I don't know much about Imuran either so if anyone has experienced taking this drug I'd love to hear how it worked for you. Thanks! -Kris
  11. This happens to me often when I ride and/or exercise and become overheated. I think I posted a thread about it on here not too long ago. I have tried cooling vests, 2 different kinds, and it didn't help my problem. I throw out a lot of norepinephrine when I exercise so this is most likely the culprit in my case. Hope you find your answers!
  12. I was rehabbing a farm in WI when I got sick. I live on the IL/WI border. Lyme has been mentioned many times. Thanks for the info. Hope you are feeling better with treatment.
  13. p8d I hope that the treatment for Lyme works for you! I've had people suggest that to me as well. My usual answer is that I tested negative for Lyme but apparently that doesn't really matter. Mine all started with a virus too. Keep us posted as you do your treatment. Sure hope it gets you feeling better!
  14. Oh and Sarah, the Botox injections are not terribly painful. They are done by EGD so I'm sedated. I do get some cramping for a couple days afterward but not everyone does. It has really helped and my fear is that the insurance will still say no on the peer to peer review if that ever takes place. If they continue to deny coverage I don't know what our next step will be. There are pyloriplasty surgeries but they sound very high risk to me with the worry of then getting dumping syndrome. I hope that Mayo will be willing to look for a cause. That's the main reason I'm going there again.
  15. Thanks everyone for the support! They haven't been able to tell me what is causing my GI issues but my rheumatologist feels it's related to autoimmune disease. I had my rheumy talk to the neuro at Mayo to see if he could see me but he said that my problem is not neurological so he won't see me. My "POTS" diagnosis wasn't a true diagnosis, rather a diagnois of a "hyperadrenergic state". My only findings were high norepinephrine which they felt could be due to taking a drug called Pristiq which was an SNRI. I have since stopped taking it but no one is interested in rerunning the blood test to see what the levels are now. I still have all the same issues that I had when seen at Mayo. To be clear, the GI doctor never said it was psychosomatic, he just would not give me the definition of globus which made me look it up and then call the ENT. The ENT hinted that the GI doc most likely thinks it's psychosomatic. The Botox injections that I receive are for my Gastroparesis and are done to the pyloric sphincter of the stomach, not the esophagus. The esophagus stuff is new with a diagnosis after manometry showing ineffective swallowing and slow motility. Now I have this feeling of something stuck in the back of my throat and I'm told by the ENT that he SEES edema and irritation in my throat but the GI doc says that he hears this all the time from ENTs and this is somethingn they agree to disagree on. Even though I had the ENT reiterate (to me) that he did in fact SEE SOMETHING in my throat the GI doc refuses to believe it. Again, makes me FEEL like it's in my head. He never said so. Now I'm stuck with this feeling of something stuck in the back of my throat. BUT WHY???? That is what is so frustrating!! Why are all the GI issues seeming to get worse without a clear diagnosis? Won't a diagnosis give doctors a better road to follow? The GI doc likes to say that it's due to Scleroderma but the Sclero doc says I don't have Scleroderma. The neuro says I have a "hyperadrenergic state" but other than taking clonodine has no explanation as to why I would have GI issues. The last time I went to Mayo for the autonomic testing they sent me to the GI lab and the doctor I saw went over my notes and didn't even examine me! She was upset that my old GI was treating me with an SNRI for my consitpation issues and said it was not a normal plan of action and felt no need to do any additional testing. At that time, constipation was my biggest GI issue. That was 2013. Here we are 2 years later and I have slow motility or NO motility to everything except the small intestine which seems to be just fine! ***??? I'm sorry for going on and on. I'm just so frustrated right now and maybe I took the GI doctors silence as him suggesting something when I shouldn't have. He's still a jerk though LOL.
  16. I've had 5 different GI doctors. I'm stuck with this one as he's the only one who has made a difference. There was one other who could think out of the box but he wasn't super helpful either and when I was hospitalized I ended up back with this one. Maybe a different PPI would help but at this point I'm afraid to even ask for one. I'm headed to Mayo next month. I'm looking to get a definite diagnosis of some sort as to WHAT is causing all the GI issues and why they are getting so much worse. I was hoping to see the neuro who did my autonomic nervous system testing while there because I'm having a lot of issues with temperature regulation in the heat this summer but he doesn't want to see me
  17. I was taking Pristiq which is an SNRI when I was evaluated at Mayo. My norepinephrine levels were very high and they suspected it could be because of the medication. I have since stopped taking the meds but still have a lot of the hyperadrenergic issues such as flushing, sweating, vertigo after exercise. I've been curious to have the blood tests run again now that I'm off the Pristiq to see if I still have such high levels.
  18. kellygirl thank you! It means a lot to me just to have been heard! I have one doctor who is wonderful but he's a rheumy and can't help with the GI mess. I just wish with all the stuff I have going on that there was one place to go where you can get answers. I'm not even sure that Mayo can help me. I need to be seen in the motility clinic but they have only agreed to see me in the regular GI department to be assessed. If they feel I need to then be seen by motility they will refer me on but if they feel I've had all the tests necessary already then they won't refer me on. I will most likely be making the trip there by myself as my husband "isn't sure" he can get time off work. Whatever. At this point I'm just doing what I need to do to take care of myself. Thank you for responding! It means a lot! Kris
  19. I do suffer from dysautonomia, but I also have autoimmune issues which have affected my GI tract. If this is the wrong forum to post this on, please delete, but you guys are my friends and I really need to vent! I have global dysmotility of my GI tract with the exception of my small intestine, which for some reason seems to work just fine. I'm on my way back to Mayo for the second time to be seen by the GI doctors there again. Why you ask? Because the doctor I have been seeing is an arrogant jerk and I can't stand him! It's a very long story and I won't go into all the old details but let me tell you that I see him because he is the only doctor in my area that does Botox injections to the pyloric sphincter which I need in order to keep me out of the hospital every month for a week at a time. Fast forward to this week. I have had a feeling of something being stuck in the back of my throat for the last 3 weeks. I have slow motility of the esophagus so I was worried that maybe there WAS something stuck. I made an appointment with my primary doctor first thinking he could have a look and maybe it was nothing more than an infection of some sort. He referred me to my ENT who took an endoscope and looked into my throat. He found obvious edema, irritation of the throat and inflammation. He said it was due to my acid reflux (which has been really bad since they switched me to a generic form of Nexium) and said the reflux was irritating the back of my throat. I was feeling the edema when I swallow. He told me to let my GI doctor know what was going on and to see if I should maybe add Zantac to the mix if it doesn't go away. So I email the GI doctor. He RIGHT AWAY says that it isn't the acid reflux but something called globus. I asked him what that was but he didn't answer, so I looked it up. It seems it's a psychosomatic condition brought on by stress or depression of the "feeling" that something is stuck in your throat when in fact nothing is. So I called the ENT back and asked him if in fact if he SAW something in the back of my throat. I explained what the Gi doc said and he laughed and said that he SAW edema, inflammation and irritation due to acid reflux. I told him the GI doc wouldn't tell me what the definition of globus was and he said "that's because he doesn't want to say it's psychosomatic!!" This isn't the first time that this doctor has told me that this is in my head. He said my pain from my Gastroparesis was in my head as well, yet after having Botox injections my pain has disappeared for months at a time! I am so sick of this doctor, his arrogance, his lack of professionalism and his insistence that my problems are in my head. I am headed to Mayo in October to see if we can get to the bottom of why I lack peristalsis in my esophagus, stomach and colon. The current GI doc says it's due to Scleroderma but I don't have a solid Sclero diagnosis. I want answers and clearly this guy is not going to help me get them, especially if his attitude is that it's in my head. Mayo does Botox injections. If I have to drive there (8 hours from home) every 3 months to avoid this guy I WILL!! The next problem with him, my insurance doesn't want to cover the Botox injections. They are calling it experimental. The last one has not been covered and it cost over $8,000. This doctor is supposed to do a peer to peer review where he talks to the insurance doctor and explains why I need this procedure. It keeps me out of the hospital for a week at a time every month!! He has not made the phone call yet and I am due for another injection now. I don't think it matters to him. He makes me feel so unimportant and now makes me question my own sanity!! AHHHHH!! So frustrated right now! Thank you for letting me vent and if this isn't ok because it's not dysautonomia related, please feel free to delete. Thank you!! Kris
  20. This happens to me too. Same thing with the covers, on and off all night, blazing hot then freezing cold. I've noticed on the days I have exercised I suffer more from the coldness, especially at bedtime. I do believe it has to do with the release of adrenaline during exercise. I sweat profusely when I work out or ride and even after a warm shower I end up freezing cold. My husband is still shocked at how cold I become. I'd be interested in finding out what can help with this. Interesting that someone said magnesium can cause a problem. I have severe colonic inertia so I take a magnesium supplement twice daily...
  21. Hi Mike, I was seen at Mayo clinic Rochester, MN. They will do a tilt table test to see what happens to your blood pressure when you go from laying down to standing. They also did a sweat test to see if there were areas of the body that weren't sweating or were sweating too profusely. They hooked me up to a halter monitor for 24 hours to look for palpitations or irregular heartbeats. They tested my blood both laying down and standing up for levels of norepinephrine. (I have a flushing disorder Hyper Pots). They also sent me to many other doctors to have testing done to see if the autonomic nervous system was causing problems in those areas, GI, ear nose and throat, vascular doctor. I hope this helps! Good luck at your visit! -Kris
  22. Headhunter, you are right. It seems that I'm at my worst during the summer months which is why I thought that maybe a cooling vest would do the trick. I'm convinced now that I need to go back on medication, clonidine or something similar to control the norepinephrine release. Thank you for your reply, it means a lot that people take the time out of their day to respond. Katie, you are probably right although the ride started out on a very positive note. I didn't have to drag any children with me to the farm, drove the convertible on a beautiful day to go ride, had my new vest on which I had high hopes for...then it all just went downhill. But yes, I need to listen to him and he has taught me so much in the 12 years we've been a team. As I said before, I'm very goal oriented, so I have picked out shows that I want to attend as well as a lesson with a top trainer in the area who knows what I'm going through and has been very patient waiting for me to finally schedule that lesson. It's not going to happen anytime soon and those shows aren't something to shoot for anymore, I guess just getting on and not having a physical breakdown should be my new goal. It's just a lot to give up. I know you get it because you have been there too. Sarah, thank you! I love your replies because they are always so upbeat and positive. I have only tried clonidine and I didn't like the way it made me feel when I was working full time. I was only taking 2 small doses a day and they wanted to up it to 3 doses at a higher dose eventually but I never made it there as it made me feel so tired and out of it at work. Now that I'm home, I'm willing to try it again. My doctor at Mayo was the one who prescribed it. I have reached out to him but he hasn't responded. I am headed back to Mayo (if they ever call with the appointment!) soon for my GI issues and that is why I contacted the doctor who did my autonomic testing to see if maybe he could find a moment or two to spend with me again, maybe retest my norepinephrine levels to see if they are still high. When I was there last, I was on a drug called Pristiq which is an SNRI and they thought that the high levels may have been due to the drug. I went off of it immediately upon returning home from Mayo and never went back. I do have Ativan on hand if I'm having stomach pain but I rarely take it. My BP tends to run high although I've passed out before on Norvasc so... I don't want to start anything though until I have been seen at Mayo so that they can see what I'm going through now. Even if the doctor gets back to me and prescribes the clonidine again, I think I will wait to start it until after I've been seen. Thanks so much for your reply, you always make me smile! TwynnB, I'm sorry for all you are going through. You are a veterinarian! Growing up that is ALL I wanted to do and I did take a job as a tech right out of high school but I was too soft hearted to stick it out, I wanted to bring home every animal and was in tears daily! I'm sure as I matured I would have gotten better with the circle of life but at that time it was just too much for me. I used to see a counselor as well. One day I was telling her that my riding is who I am and she was arguing with me that it is not. I haven't been back LOL. It's difficult to think of scaling back further from my riding as for over 25 years it was my career! I'm lucky to be able to ride a couple of days a week but I used to have at least 4 horses in training and a lesson program 6 days a week! I am trying to re-identify with this new me and maybe I have to find something else but I just don't know what that would be. Last year I was able to compete again for the first time in 7 years. We did remarkably well and I guess that's why this is so hard, I set goals for us that aren't attainable this time around and it's sad because my body isn't cooperating yet I know I CAN do this but not when my body is being dysfunctional.,,,ugh! Lol. Thanks for reaching out! It means a lot!!
  23. I gave up showing for 7 years and somehow managed to get two shows in last year. It felt so good to be back...I just really thought I could do it again but apparently this body is not going to cooperate. My Mom said exactly the same thing you did. Maybe only walk in July and August. I'm so driven though, so goal oriented. It's hard for me to get on and NOT work, even with vertigo and excessive sweating and then feeling the brunt of it over the next 24 hours. I just wish people understood what happens. Once I get over the excessive sweating and goosebumps and vertigo, then I go through whole different stage of being too cold and not being able to get my body temp up to normal. No amount of clothes or blankets help and then BOOM back to being overheated only this time it's a dry heat like a fever. It's exhausting. I put a call in to my primary about IV fluids but honestly, until we can get the excess norepiniephrine under control, none of this is going to get better. I need to be back on clonidine or something similar and see if that helps. The primary never even called me back. The thing I feel the worst about though is losing control. I got so pissed at my horse today. He wasn't cooperating and he was making things much more difficult than they needed to be, he knows better, but a week off of dressage work and he thought he could slack. I think the excess adrenaline makes me snap easier. I'm not an abusive person/rider but I lost it on him today and it just makes me want to sell him to someone who isn't so screwed up. I have a lot going on at home too and it's all just too much. I can't stop crying over this and I know it's stupid. There are people much worse off than me but it's the little things in life that are keeping me going and right now, there isn't much of anything to look forward to. Thanks for always chiming in Katie. I know you really get where i'm coming from Kris
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