lieze

My biggest fear was my heart just stopping. That was the feeling I was getting but for the most part that doesn't happen anymore. I also get the feeling that I'm not getting any air at all and it is a horrible feeling. I just try to be thankful for everyday. I think that is where I am right now. In trying to improve my overall situation I'm experimenting with meds right now and it's a bit uncomfortable. I guess if none of it works I can go back to my tiny dose of Xanax and trying to stay strong by eating well and drinking lots of fluids. I was at least partially functional this way.

Wareagle I feel the stuffiness in my nose-it feels like very little air can pass through does the nasonex seem to help with minimal systemic symptoms?

Update-I am not able to tolerate this claritin even at a very low dose. Just had a very bad episode while driving. Just got extremely weak-felt the pressure in the bowels as if I needed to have a bm and the feeling of impending doom. I recovered. Made it home okay and laid down. I am going to have to just let the claritin get out of my system. I am scheduled to work on Friday. I was doing better with just 1/4 of a Xanax it did not effect my mind at all, in fact made me feel more alert and it helped with the tightening up sensation I get. I'm not sure how it was working but it was having some effect. My plan is not to try any more antihistamines until after my two work days Friday and Sunday, then I'll try again. I'll just keep the liquid Benadryl with me at all times and take the Xanax if needed. And I"ll just try to fight through the feelings I get. I can make it been living with it for a year now and prefer just coping than feeling so doped up I feel like I'll drop. Really curious to find a way to work this out when it's not going to affect my work schedule. I appreciate all the input. Tracy is a DO. She told me if this didn't work to get a hold of her in a week. It may take more time to give it a chance since I'm going to do it around my work schedule. I'm not scheduled again until the end of the month. I think I'll try the H2 next. She advised I only try one thing at a time so I would know what effect I was getting. Thank you so much for just being there while I go through this. Happy that there may be a solution but it's stressful getting there.

That was the thing I didn't understand. She acted like the pepcid would help with the problem. Won't it just work on the stomach issues and not the lungs? What about either trying just a sip of the benadryl liquid or getting claritin liquid and doing just a minimal amount? Like a drop on the tongue.

I'm very sorry to hear that I hope that you continue to find peace.

I saw my doctor yesterday related to the histamine reaction I had. She thinks I am histamine sensitive. She wants me to try taking H1 and H2 blockers. She ordered pepcid and atarax and I still have claritin left over that she ordered several months ago. I'm not doing so well on the Claritin, it hit me like a ton of bricks tonight and I feel a bit wiped out. I almost feel like I'm seeing spots. Is there another H1 that I could try that might be a little gentler? I also have liquid Benadryl. My lungs were tightening up on me today along with my throat but to be honest being right in the middle of an episode I was fearful to take anything. Later in the day when I was feeling a bit better I went ahead and took 1/4 of the claritin. I really don't like the way it feels in my system. I can breathe but ugh. I feel too alert but no energy. Kind of wired but a weakness accompanying it. Any ideas?

This happens to me to. It just comes and goes. Just try to slow down if you can take lots of nice deep breaths, make sure you are getting enough oxygen. I'm not always this way but I notice it off and on.

Here's a link for you. http://www.mdjunction.com/adrenal-insufficiency

You might look at an adrenal insufficiency support group? Read a little even throw out your situation and see if anyone can relate. I peaked in there at mdjunction but it didn't fit my symptoms. There is a really intelligent guy (seems to be) named Bob and I think he's from the UK. You could even pm him with your symptoms and ask him if he thinks this may be what you are experiencing. It's free to join and he might be able to tell you exactly what steps to take to get this checked out.

Julie and Carinara Hugs to both of you. Thanks so much for responding to my post. I guess I'm thankful I have a chance to explore this and get treatment. My lungs tighten up on me a lot and my throat also. I'm hoping that I get relief of some of these symptoms along with finding out what things I have difficulty with even though it's a bummer to think about eliminating foods from my life-I guess it's worth it in the long run.

What a bummer. I was at work. I had an episode much worse that this one after eating leek soup. I came home and looked it up this occurred over a year ago and read that leeks contain an allergen that can cause an anaphylactic type response. They are in the lily family and onions and garlic are also in this family. So I kind of just thought eh who know? For a long time I was so careful with foods-didn't know what might set me off and then it just seemed that I did not have any problem. Today I had made chicken on the grill and had added Kikkoman teriyaki sauce to it. It's the type that's a little thick with sesame seeds in it. I had eaten it before with NO problem. Today wasn't so lucky. Went to break ate it within 20-30 minutes I started getting flushed immediately got the urge to have a bm, and my heart started racing. Next I just felt heat and intensity in my chest and I caved. I had called another nurse back when my heart rate was at 120. My symptoms were peaking and I had her call the squad. In the squad they said I had signs off allergic reaction. Urticaria across my throat and patches on my face and that I had a wheeze. He said I would probably have to be tested for allergies and carry an epi pen. My bp was elevated in ER. The doctor determine I had a histamine type allergic reaction and told me that foods I ingest or chemicals I'm around could cause it. He said especially fish. Hmm I did get probably a histamine response after lobster many years ago but nothing as intense as what onion does to me. So before going back to work I had husband stop and buy me liquid Benadryl. I feel like I'll have to carry it with me everywhere. And I follow up with my family doctor this week. Any insight on this? I guess I'll look it up online and see what I can find. My first thought was that MACD that I hear some of you talk about.

Xanax! I know this is a contraversial drug and when I was at Cleveland Clinic they called it the devil drug but it is very effective on vertigo migraines. I know that you have dealing with this longer than I have-but vertigo migraines were one of my first undeniable symptoms. I mean it was so bad I felt like I couldn't even walk down a hallway-hallways and the appearance of them made it worse. I also had a sensation that my head was separating into sections and I guess this is also a symptom of migraines. I don't get the intense pain usually I guess I am lucky and I seldom get nauseous. I get dizzy and drowsy like you describe. It's just a suggestion.

Yes I'm glad I had it done. The worst part for me was just the anxiety. It was not that painful for me but I've had four babies so maybe I'm comparing it to that. It has taken me a while to recover how much related to the ablation and how much POTS I don't know. Some get instant relief but maybe those people don't have POTS. Like one guy told me he was back to work the next week! Ha! I'm coming up on my 1 year anniversary in July and my heart is just now starting to really calm down. I am glad I had it done. I would not have wanted to live with SVT's for life. No fun at all. I know what you are going through and I never knew when mine were going to come on. I had no SVT's whatsoever after I had the ablation and my resting pulses came down also. They told me that might happen. So prior to ablation my resting heart rate was at 99 now it is more like 70-80's depending on how relaxed I am. Before when I got up to do anything at all my heart rate was at least 112 or higher. Now I can stay around 99 and slightly above 100 depending on what I am doing. My heart just feels so much less reactive to everything before ablation I was all over the place. Speeding up slowing down stopping all together it was nuts and I could feel it all. Like I said took a while to really calm down but so worth it. They started giving me all those meds IV and nothing was doing it they finally were able to get me going with adrenaline. Makes sense to me since some think I probably have the type of POTS where adrenal glands are involved. Even with my high norepinephrine levels post ablation they would get me tachy but that was it. They told me it takes 3 months for the heart to heal to develop scar tissue over the pathway they have ablated. I had some pain after but I was so determined I wanted my ablation to be a success I would not take anything for the pain because I wanted some nice inflammation there so I could get a pretty scar and have no more of those nasty SVT's. The pain of the ablation was so much minimal to me compared to the horrible feeling of the SVT's. Just give yourself plenty of time to rest after. I tried to do too much and ended up with some icky POTS episodes I would recover in short time and then be up and all over the place again, just think if I had to do it over again I would have babied myself just a little more knowing that I do feel this much better now. After all it's a procedure on the heart. A little activity is probably good just don't try to rush around and go places that first week like I did. Bad idea for me.

I can relate to this too. I can tell I'm getting overstimulated when driving and when going into places like grocery stores. There is too much visual input and I get overwhelmed and usually feel some type of anxiety symptoms. Also fluorescent lighting. Sometimes when I'm feeling really bad just closing my eyes for 20-30 minutes totally takes the symptoms away. And xanax makes me almost functional. Xanax also increases GABA in the brain I remember reading that. So my question has been if Xanax takes away my symptoms are they real? Is it a real deficit I have or perceived or a mixture? I also notice reading on the anxiety forums people get fixated on their hearts just as I did. Now my heart has calmed way down but part of it was me talking to myself and realizing my heart only did certain things when I got really worked up. The other part is I do think my nervous system is calming down and not overreacting so much. For the most part I don't jerk out of my sleep any more in a startle and gasp for breath. So now I've moved from the fixation on my heart feeling as if it was just going to stop-which is a common phobia of anxiety sufferers and I really do believe we are getting a sensation. To my breathing and I mess my breathing up all the time and have to do breathing exercises to prevent from hyperventilating and my chest tightens up on me. These are also things people with anxiety experience. I maybe way off track here I don't know. I just notice around the constant noise of my children I can get triggered into feeling some odd symptoms very easily. My mind also feels like it's functioning on a couple different levels, I was wondering about that today because I am always feeling so scattered and it's fatiguing but like right now we have tv on, my kids are on the couch, so I am taking mental note of them, and husband is rummaging in the kitchen and I am attempting to type. How would I feel in a room alone with silence? I don't know sometimes I feel like I'm losing my mind and maybe my mind is just too busy is the only problem. I realize there are people at this site that this doesn't apply to. My intention isn't trying to imply that this is psychological. I believe in my body the psychological stress if you would call it that just from being a functioning being the stress on my body is manifesting in physical symptoms. I am fearful now of driving down the road, walking into groceries, and going through the recyclers. There is something about that place that sets me off? Too much activity? There are multiple things going on at once and icky smells. Maybe it is zapping me. Guys driving fork lifts, conveyer belts moving, I try to be so aware of other cars moving in and out that I don't get hit, and then the person helping me starts asking me questions. I can't take it I go into sensory overload! Just my thoughts on this let me know if I am just out of my tree. lieze

I think it's in those vitamin waters. I like those! They have them 10/10 right now at the grocery store and I always feel pretty refreshed when I drink them but not sure what it's doing for me. lieze

Call the hospital and ask-there might still be someone there. lieze

The other thing that sets me off is just when my kids start goofing around and get out of hand. While in the car too if they start screaming or chattering it up. I just about lose it and start feeling symptoms. I think our thresholds are way much lower for handling stress. lieze

I think any stress has the potential to make it worse. I was recently worried about my job-they did away with a position and I was walking on eggshells. I had to go to work and I felt like it was my last days there. I was getting all types of physical symptoms and they seem so much more exaggerated than normal anxiety. My right hand was going numb as I brushed my teeth and I had to tell myself this was just butterflies. I know fearing the end of my career there was the source but these were real physical symptoms. I also feel my whole body shake almost like shivers just from normal anxiety. Everything does seem that more exaggerated since our systems are that much more sensitive. I just had to really talk to myself that whole time but there was no real thought process involved the anxiety went straight to physical symptoms for me. lieze

Erika, I am scared too on my own level-feel just as vulnerable as you do. Just doing simple things like going to the grocery or through the recyclers tightens my chest up to where I can hardly breathe. Here I wanted to work more? I can't even do simple tasks -what is happening? And the children thing. I just cry and feel so down because the least little thing stresses me. I end up getting up and doing what I can just because I don't know how long I'll be here and I want to do what I can while I can do it. You know what so much of this is the mental /emotional/ psychological impact. We just don't know what our future will be and sometimes what we're feeling at the moment just isn't good. I get the comments from my children too, that I wish you were never my mommy etc etc. It hurts and it hurts to think I may not be here to watch them grow up, to see them get married, to see grandchildren. I think we have to just take one day at a time? And hope for the best. Maybe somehow miraculously you'll get back to a normal and the spasms will stop. I know it is frustrating to not know what is wrong but for all the things they tested for that were negative that is really positive. I just wish for all of us that this was just a very bad nightmare that we could wake up from and I know I am one of the luckier ones that seems somewhat functional but it still doesn't feel right. I hope there is a way that you can get the emotional support that you need. I know that this forum isn't meant to be a diary or blog of daily thoughts but I don't know if something like that would help. I get those same waves that I just want to scream, cry, give up all at the same time and just either have it be over or get better! I had to think today that we really do take our health for granted. My mom I guess must have experienced some of these feelings being diabetic with me there as a child never knowing if she might have an insulin reaction with no one else around. It's difficult to understand that level of vulnerability until you experience something like it yourself. I am thankful for the years I had that I was healthy and that it's not one of my children with the problem. It has to be even that much worse to watch a child suffer with this problem. I guess we have to learn to hang on tight to what we do have and be thankful for that and not lose hope. Hang in there and let us support you however we can. lieze

I'm still waiting to follow up but yes mine was abnormal. I have adrenaline surges that kick my butt. There are medications that can help block the effect on the heart if she can tolerate it. When I was on atenolol it really helped but my bp's are too low to tolerate it. I have chosen to just deal with it. lieze

This is all interesting to me because when I went for my cardiac ablation they ran all kinds of tests on me and the only thing that was abnormal was my amino acid gap. Which the endocrinologist that I saw later stated indicated I was malnourished. I wondered about just taking a protein supplement. I have been trying to eat foods that contain all the amino acids like bananas but I don't know that it's enough. I think it would make sense that the heart would start beating fast if the cells were screaming I need more energy or oxygen and maybe why I get that sensation that I'm suffocating and just the fatigue. I haven't known what to pursue as far as treatment but it seems that this might be a way to go for me when I get around to it and maybe could even pursue some of the follow up on blood levels of the amino acids with my family doctor in the meanwhile. And get the go ahead to start supplementing where I am low? I was happy to see your post Megan of encouragement! I had been reading this last night and was feeling as if maybe a little light was going on for me and then felt very discouraged before I went to bed. A friend happened to look it up and share with me that Vitamin C is required for the synthesis of carnitine so those of us that felt improvement taking it-perhaps that is why? lieze

I agree-it's like a miracle drug and it does only take a tiny tiny bit to work. I have 0.25mg tablets that I have had ordered for the last two years. It took me over a year to get through the first bottle and I'm just starting in my second bottle of 60 that expires in August. I have found that I can just take 1/4 tablet of the 0.25 and have amazing results with my breathing and other POTS symptoms. I just take it as little as possible since it is addictive. lieze

Can you please share the breathing exercises? I do feel that my body is calming down a bit on it's own but I do still every once in a while feel my breathing get out of wack. I'd like to try it if it's not too complicated to share. lieze

Wow that takes a lot of guts to get out there on the field and keep playing through the black outs. I just saw recently on tv a basketball player that had to quit playing went to the sideline. Put his head on his coach's shoulder and passed out. They took him out on a gurney. They said it was the second time it had happened I think and I automatically was suspicious of POTS. How discouraging this can be for all of us but especially when a person has talent and our bodies just start not cooperating with us. Kudos to everyone here reading and all those who have not yet found us that are fighting this on what ever level they can and persevering through a lot of rough times. To the good days, lieze

And the other thing that freaked me out was the lady that got the shingles ended up dying right afterwards. She started having tremendous pain and they treated her for it and she died. Her daughter said that the same thing had happened to her sister who was much younger-she broke out with shingles and then died not much later. I guess my mom's cousin who is a nurse also just had a case of shingles herself and now she is tachy. She is only in her 60's I'd say. lieze