Lovebug

Sounds like typical POTS to me. Normally my BP goes up instead of down but once when I was having an episode (I like to call them storms), my BP & HR were all over the place. I would be extremely low if I was lying down (98/60 & HR 50s) but when I got up, I would be sky rocketed (150/110 & HR 120s). I was so uncomfortable and had so much anxiety & other symptoms like abdominal pain, diarrhea, PVC's, Headache, etc. My NP put me on an emergency plan so I implemented it and I gradually got better within 30 or so minutes. My plan is to take my beta blocker (small dose) but that's b/c my BP runs high. It scared me to take it b/c I was dropping low HR & BP's & didn't want to go too low with the med on board but like I said, I took it and it helped. I'm so sorry you are dealing with this. It is a helluva disease to live with considering it isn't deadly. But knowing you aren't alone makes it better and this website is a Godsend for all of us.

I agree...I had an MRI which showed no signs of ME (I think there are lesions) whereas I have the typical signs of CFS. I was diagnosed in 2010 (almost exactly a year ago). The doc told me it was fibromyalgia and when I inquired about CFS with my high EBV levels, frequent sore throats, and swollen lymph nodes she said, "yea, well they are the same". It is so frustrating but the good thing about that doctor is that she believed in Fibro (whereas most don't). But, a month later when I started having orthostatic changes in my vital signs (POTS symptoms) my doc didn't know what to do and sent me to a neuro. The neuro told me I had abdominal migraines even though he said other doctors would likely disagree with him (& my GI DID disagree with him, LOL). So through all this maze I've been through this past year, this is my take: Dysautonomia is the mother umbrella of all these disorders. Under which I have the following: IBS, POTS, CFS, Fibromyalgia. So some here have EDS, POTS and some have a different combination but we are all victim to Dysautonomia. What helped me initially was Vitamin D (as my levels were low) & the chiropractor. Over the summer I got diagnosed with Dys and started fluid loading and a low dose Beta blocker. Later started Celexa for my neverending abdominal pain (it has helped). I hope this helps you...let me know if you have any questions.

I have the same problem when my POTS makes me orthostatic...my BP goes up rather than down. Just this morning my BP reading on a wrist cuff was 160/117 so I took it manually. I found that I was 140/90 while sitting and 150/100 while standing. I'm sure if I took it again after standing for a period of time it'd be even higher but I know better than to stand for too long. What do I do when this happens? Fluid, fluid, fluid. I normally drink over 4L/day so I usually get symptoms when I'm slow to get the fluid in. My cardiologist will not recommend IVF as long as I can drink it...afterall, that's less invasive and you have a less chance of complications (infection, vasovagal response from IV start, etc). I hope you start feeling better and do what you need (i.e. lying down) to keep it from getting too high.

It constricts the blood vessels in the lower extremities so blood doesn't pool and the person will not pass out due to lack of blood flow to the brain. However, there may be other benefits (just good muscle tone overall from isotonic contractions).

I can somewhat relate...about 10 of us that worked at the same state facility have gotten sick with similar symptoms. Mostly autoimmune illnesses. I am convinced that there was a common exposure. Ironically, I'm in south Louisiana also.

I can relate to your last statement, Dani. My husband is afraid to touch me sometimes. He says, "I don't want to throw you into a tizzy"....LOL! I just tell him I'm fine (at the moment) and that he better "get while the gettin is good".

AMEN...GF!! I feel like you...why should I have to give up sex? I want to be somewhat of a normal wife. I've contemplated having a hysterectomy due to a past history of endometriosis and unable to take the pill to treat it but...worried how it will affect me. Thanks for your input!

LOL...thanks for the witty response. It's not my meds. I mean, when I feel good enough, I can do it but it usually wears me out and I often just don't feel like doing it.

Hi Dani! I'm so sorry you are feeling the way you are. I have been there but thankfully I'm somewhat better now. I have bad days but there was a time where every day was bad and (if I was lucky) I had good moments sprinkled throughout those bad days. What has helped me is: fluid loading, a tiny-tiny dose of beta-blocker, a TINY dose of Celexa for my pain, and my husband sleeps in another room so I get enough sleep. I can't believe how much he was affecting my sleep but I can tell a difference now. What you need to do is let yourself grieve. Go through the stages (you may fluctuate b/w them and that is OK). But we have truely lost something when we got this illness...ourselves! Sadly, one of the losses I'm dealing with now is the ability to have children. This disease has taken away my desire to even try. I can't imagine what you are going through with a 1 year old. If I was not diagnosed with this, I would defnitely try but as it stands...there's no way. I pray that you will get better and have the strength to get through the trials of this illness. HUGS!!!!

Thanks to everyone for your responses. It's nice knowing I'm not alone. To Dani...I completely relate b/c I have IBS also with bloating and alternating b/w constipation/diarrhea. I also have a history of endometriosis (which causes painful sex). The term you are looking for (I think) is dyspareunia. Here is a link that explains it: http://www.mayoclinic.com/health/painful-intercourse/DS01044

That is interesting b/c when I took a statin for a week, I could barely get out of the bed (or walk) but a year or 2 later I did OK with my anesthesia. I will say this though: when I woke up from the surgery, I felt like it was difficult to breathe. I told the nurse and she said "your sats are good" so I asked her when I was extubated and she said a few moments earlier. I just attributed the loss of "will to breathe" to that. Maybe it was dys...? Otherwise I recovered fine.

I feel so bad for my husband b/c I'm never interested in sex. I have such diffuse abdominal pain. And if I'm not hurting in my abdomen then I have pains in my chest or back. Most of my other symptoms are under control but the pain is present every day. I assume the pain is part of my dysautonomia, especially sense it migrates so much BUT I can't help but think that something else is there. I may make a trip to my GI but have put that off b/c my cardiologist doesn't want any other doctors to "mess me up" since most of them don't understand dysautonomia. But back to topic, how can I even think about sex when my insides hurt all the time? Does anyone have any advice? Do you feel the same way?

I had surgery in 2009 (prior to my diagnosis but when I was feeling horribly) and I had no problems whatsoever from the anesthesia. As a matter of fact, I loved it.....LOL! BUT I was only under a minimal amount of time as my surgery did not last very long (not sure if that makes a difference with dysautonomia). Now...the pain meds I took after...well, not so good. I only took 1 pill (half at a time) and did NOT like the effects it had on me. Now I know why.

In the beginning I titrated my water to my symptoms and that equates to 4L (or more) per day. YES....that's 4000mL or ~120 oz, however you want to look at it. My doc told me to supplement with Powerade ZERO (b/c it has no sugar) for every 3rd 20 oz I drink. However, I have bad GERD and this doesn't sit well with my stomach so I dilute it with water....go figure, lol! And I don't drink the Powerade daily. I also try to add salt to my food but have always been a "low salt" eater. Interestingly, I must be careful with the salt b/c when I have Dysautonomia symptoms and I'm orthostatic, my BP goes UP not down (along with high HR). But if the salt helps me hang on the the water, my BP will eventually go down. It's weird and backwards but I'm so thankful I don't have the fainting spells that so many here have. Hope this helps!

You have found a wonderful home here with lots of help! Let yourself grieve anything you've lost and realize that you will have good days & bad days. Always remember: you are never alone!

It's great to hear you had a better day. And I get angry with God alot. I think he understands. Afterall, he made us. May I recommend the book "The Shack"...it's given me an entirely different perspective on God and my relationship with Him. It's a little strange (unconventional) but opens up alot & I feel more free in how I can communicate with Him. Keep hanging in there!

Our systems go "haywire". My period is my worst time for this disease, I hate it! Possibly b/c it affects my blood volume.

Hi Tennille, I feel terrible that you are going through all this right now especially with this illness which you must deal with on a daily basis. It just makes everything you are going through that much harder. The best advice I can give you is as follows: First, I think maybe now is a bad time to rely on your husband. He has so much on his mind and is fearing for his life and may be thinking irrational thoughts due to this fear. I notice you said you don't have any close friends that you can lean on so please continue doing your venting on here...with us. We ARE listening to you even though it's on the computer, and if we are all you've got right now, then go ahead and let us have it. Sometimes just writing down all your troubles helps and clicking that submit button so that we share your burden with you may help just a little bit more. You've stated in other posts that your husband has always been supportive so it sounds like he just has nothing to give right now. Be there for him as much as you can and know that when he is better, he will be there for you...again! Second, I too get very angry with God. Sometimes my life seems so unfair. Other times I feel extremely blessed. But make no mistake that God sometimes just pisses me off, ya know? You have every right to feel that way and guess what? He wants you to share that with him. When you are angry with someone, you let them know. God is no exception. He wants to be our friend (on top of everything else) so talk to him like a friend. Just venting to him will sometimes help. I've often been angry at God b/c I've felt so alone and distant from Him. I would just ask (in tears) "WHERE ARE YOU?"...still, no answer. But I never stopped asking and I feel much closer to Him now. Keep seeking Him. The bible tells us "draw near to Him and he will draw near to you". I so hope you feel as though He hears b/c He really does. I hate to keep posting songs for you but below I've attached another one by Natalie Grant that talks about the false belief that we have thinking God will give us all the answers and make everything better, which isn't necessarily true. His promise to us is to carry us through the hard times, he won't abandon us...we WILL have trials, troubles, and heartaches BUT he is with us "holding" us the whole time. And that's the name of the song "Held". I hope it touches you. Third, don't forget to take care of Yourself first! I always tell my patients that want to check out of the hospital AMA (against medical advice) to go take care of family or personal matters that "you can't take care of someone else if you can't take care of yourself". And that's so true. If you need to lay in the bed all day to recoup, then do just that. Maybe have your parents take your husband to the doctors appt and leave the kids at home with you (since they are older)...just a suggestion..? Fourth, don't hesitate to talk with your doctors about the need for Xanax or other meds. If they know what you are going through right now, they should have no problem giving you what you need. It's what they are there for. I can't answer about the other meds b/c I've never taken them but maybe some of the others on here can. Fifth, make lists. Maybe you will feel better and have somewhat of a sense of accomplishment if you wake up each day and can cross only ONE thing off your list. I'm obsessive compulsive and lists help me tremendously. It can also help you if you have memory issues. Sometimes I just brainstorm and jot down everything important to get done. Then I actually make a nice, neat, numbered list with most important things first. It feels so good when I can complete a list or an item on the list. Whatever happens just know that we care about you and we are all here for you. I pray for brighter days for you in the very near future. Being realistic, it will take your body a while to adjust to all the stress you are going through so let the goal be to feel a little better each day with some relapses being inevitable. And this period of healing may not even begin until after your husbands surgery. Hopefully you can count on your family/friends to assist where needed.

Hey Sue, I sorta agree. I think the cortisol ties in to the fact that the autonomic nervous system controls all these hormones so it's just another thing to be abnormal. Also, the BP increase could be due to an increased catecholamine release in response to the orthostatic changes that you mention... As far as the high BP affecting the renin angiotension system, I think it has more to do with blood flow to the kidneys (poor perfusion) but what is causing the poor perfusion? And where does all our volume go? I drink more than 4L/day and don't urinate excessive for that amount. I wish I could just understand that concept, LOL! I've never had a renal ultrasound or other testing but any time we get our electrolytes checked, kidney health is assessed through the BUN/Cr and mine has always been normal. I do have pain in my flank area but that could be virtually anything related to dys.

This is some interesting stuff! I also find it ironic (although I don't know for sure if I'm hypovolemic) that I'm extremely sensitive to volume depletion and I often have orthostatic symptoms when I'm dehydrated. But the ironic part is that my BP goes UP (not down) when I get this way. I've posted a little bit of info below on the Renin-angiotensin system so that some may understand it better. I'd also like to know how cortisol plays in to all this b/c I had an unexplained high level of cortisol (the stress hormone) but was negative for Cushings. "Renin is an enzyme secreted into the blood from specialized cells that encircle the arterioles at the entrance to the glomeruli of the kidneys (the renal capillary networks that are the filtration units of the kidney). The renin-secreting cells....are sensitive to changes in blood flow and blood pressure. The primary stimulus for increased renin secretion is decreased blood flow to the kidneys, which may be caused by loss of sodium and water (as a result of diarrhea, persistent vomiting, or excessive perspiration) or by narrowing of a renal artery. Renin catalyzes the conversion of a plasma protein called angiotensinogen into...angiotensin I. An enzyme in the serum called angiotensin-converting enzyme (ACE) then converts angiotensin I into....angiotensin II. Angiotensin II acts via receptors in the adrenal glands to stimulate the secretion of aldosterone, which stimulates salt and water reabsorption by the kidneys, and the constriction of small arteries (arterioles), which causes an increase in blood pressure. Angiotensin II further constricts blood vessels through its inhibitory actions on the reuptake into nerve terminals of the hormone norepinephrine." Encyclopedia Britannica retrieved 2/7/11 from http://www.britannica.com/EBchecked/topic/498140/renin-angiotensin-system#

You definitely sound like "one of us" to me! Welcome and sorry if you do have this condition but as Sue stated, you've come to the right place.

Were you well hydrated when you exercised? When I get orthostatic my BP goes up as well as my HR. Maybe you should try exercise in the lying down position. There is a thread started on Exercise by yuliya if you'd like to check it out. I hope you do much better the next time you exercise. Personally, I would not like my diastolic number as high as yours was...did you take it manually or on a machine?

My doctor recommended that I start on the treadmill for 5 minutes and then gradually increase as I tolerate it. He also made it a point to say I don't need to be walking briskly during this 5 minutes...just a slow walk until I can gradually increase. However, I don't always get orthostatic symptoms so I'm able to tolerate being upright a majority of the time. If you can't, try starting out on the recumbent bike (5 minutes at a time). I really like the exercise posted by bananas. I might even try that regimen. Exercise is one of the most difficult things for me b/c I was very active prior to being ill. I was always a runner and pushed myself when exercising. I find it almost pointless to get on a treadmill and walk slowly for 5 minutes & not push myself! BUT, this is something that my body needs so that is motivation. I wish you much success with what you choose and please let us know how you do.

Dani, Yes, it's working for me but I may have to increase it more as the pain is never completely gone. I'm taking it for abdominal pain. My cardiologist who treats me for Dys felt that it would help dull the pain. Ironically, a few years ago (before I ever dreamed of having Dys) I had very bad IBS and my GI doctor prescribed Lexapro for me. It helped but I did not have near the pain back then that I have now. I quit taking the Lexapro on my own b/c it made me completely numb of any emotional feelings. The celexa doesn't make me dizzy or have tachycardia but I do occassionally get these symptoms from other causes (not drinking enough water or during my "dot"). I hope you can go slow with it. I tried to up my dose from 2mg to 5mg ONCE and was somewhat spaced out. My doctor laughed and told me "go slow"...I thought I was, LOL! Please let me know if you have any other questions or issues and I'll try to help as best I can. I know we are all different but it does help to hear what others experiences are.

Hi Tennille! I just wanted to offer you some words of encouragement for the next time you check in...we do so appreciate your updates. You say that ya'll are having major meltdowns and I just want to let you know that it is completely OK & normal for you to be feeling all these emotions. Let them out so that they aren't bottled inside. But please, please, please remember that you are never alone. I don't know how religious you are but at times of turmoil, I find comfort in some of God's words to me (& to you). I have a few for you to ponder and I hope they help you. Please share them with your husband: John 16:33 I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world. Isaiah 43:2 When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. Psalm 16:1 Keep me safe, my God, for in you I take refuge. Matthew 7:7 Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. Psalm 40:1 I waited patiently for the Lord; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. Last, this is a link to a song about how God keeps you. I hope it brings you peace b/c you and your husband are in God's hands: