I'm New And Need Help, Please, Anyone !

[hyperpots]

Having trouble just writing this everyone. Perhaps you can give me some insight why I feel like I'm dying :-( . I was told I had Lyme disease a few years ago and have been trying to treat it without success for like 3 years now. All the while I was also told I had POTS, but I guess its Autonomic Dysfunction as well b/c I'm having so many issues and I don't understand what is going on.

Please tell me if any of you can relate to what I am about to write b/c otherwise I think I am losing my mind and even still, I'm scared to death.

Ok, so I sleep pretty soundly, but then around 7a.m., I start squirmming all over my bed. I feel weird stuff in my head, but lately it is in my neck. My neck gets real stiff and before I'm even awake, I just lay there dreading getting up, but know that I can no longer sleep. I start feeling the Adrenaline going before I even change positions.

My HR laying down is 85-115. It weird how it changes up on me. When I stand up, my HR goes anywhere from 125 to 170. If I lift anything over 10 pounds, the HR of 170 is a given. I don't get too short of breath until I actually sit down, which at that point, my HR really starts going before it comes down. Almost like a reverse POTS. So, even seated, I can feel these Adrenaline rushes going down my chest and into my stomach. I have been stuck in my office chair for over a week now because of all of this during the day. I alternate between being freezing cold and needing a ceramic heater blowing on me to sweating terribly, need a cool fan blowing on me. I have tried to take Xanax, but it does nothing but make me sleepy in the head. My body keeps going. I have found that Low dose nacrcotics and Benadryl seem to help take the edge off of things, but not enough for me to get out and live a little.

So, here is the real kicker. I can't handle any stress at all. Before I got sick with this. I was in charge of others at my workplace and if you threw stress at me, I could shrug it off like a fly. Now, the slightest bit of stresss and all of the above symptoms exacerbate, but what is really getting me now is that I am crying for NO reason multiple times per day. This is not a weepy cry, but an all out Cry like someone died. It can go on for a good while. I try and pull myself together, but back it comes so many times per day. Sometimes, I just look at one of my kids and that can be the trigger. All the while I'm doing this, I'm asking myself why and where is this coming from. It is 100% overkill.

So now, yet another symptom: When I stand up my right eyelid is drooping and my eye feels like it's swelling. I can't see any swelling, but I'm getting a thick liquid discharge from it. Again, this only happens when I stand up.

I have so many other symptoms that come and go like nausea, shortness of breath at rest sitting in a chair, body aches, malaise and more... I have put all of this Lyme treatment on hold and hope some of this calms down. I have seen so many Dr.'s. I did not pass out during the Tilt Table test and I made them turn off the Isoproteronol b/c I felt like my heart was going to jump out of my chest and my blood pressure was holding find. It doesn't go crazy high or low. When I stand up, my blood pressure is like 120/70 or so, when I'm laying down, it's like 105/70.

I've been to the ER like 20 or more times and they keep sending me home after labs and Cat Scans come back normal. I am seeing a specialist with Dysautonomia and POTS on Monday finally after waiting 6 mos. for this appointment. I hope I can get some answer and some relief from some of this. Lastly, I recently had a CCSVI procedure of the Jugular veins in my neck b/c I had them checked and they were sig. narrowed. I'm not sure if this could be a problem of them closing up again or not.

I'm not on any medications for the POTS. From what I've read, meds like Florinef, Midrinone are not for me b/c of the Hyperadrenergic POTS I'm having. I had Catecholamines checked and laying down my Norepinephrine was 406, but from what I've read, it's the standing levels that go up to 600 or more and correlate with Pheocryocytoma like symptoms. So, the Cardiologists I have seen havn't picked up on this and have tried to push these medications on me that I know are wrong. It appears I need something like Clonidine and an Antidepressant that deals with Norepinephrine.

I'm new here and heard of this site from another friend. Sorry to post so much on my first ever post here, but I'm really lost and scared. Thanks to whoever can give me some support that at least I'm not alone. If some of this sounds crazy to you, please tell me. I know in my heart that this is all real and I have no Psychiatric history. I will say, my Anxiety is going through the roof between the symptoms and me just being scared.

Steven

[songcanary]

Hi Steven,

Welcome to the forum. You have come to such a safe place! I remember well the feeling of white knuckle terror before I got diagnosed. So many seemingly unrelated symptoms coming from who knows where. I am actually still undergoing testing but have been pretty stable for months.

Glad to hear that you are seeing a POTS specialist soon. Hopefully this will be helpful and you can put some pieces together and get relief. This forum has so many knowledgeable people with lots of experience-I love them all. I hope you feel better soon!

[HopeSprings]

Ok, so I sleep pretty soundly, but then around 7a.m., I start squirmming all over my bed. I feel weird stuff in my head, but lately it is in my neck. My neck gets real stiff and before I'm even awake, I just lay there dreading getting up, but know that I can no longer sleep. I start feeling the Adrenaline going before I even change positions.

but what is really getting me now is that I am crying for NO reason multiple times per day. This is not a weepy cry, but an all out Cry like someone died. It can go on for a good while. I try and pull myself together, but back it comes so many times per day. Sometimes, I just look at one of my kids and that can be the trigger. All the while I'm doing this, I'm asking myself why and where is this coming from. It is 100% overkill.

Steven - you have articulated so well things I feel and haven't been able to properly describe. I especially relate to the feelings you describe when waking up. I feel like that exactly - the neck, the heart, the head symptoms. What strikes me is the time of day ...7 am (me too) - I've wondered if cortisol is playing a role... maybe it's too high or we have some sensitivity to it. Total speculation. The other thing is the crying jags you mention. When POTS (or whatever this is) first hit - it came on like a STORM - the feelings I have now, but heightened 100%. And one of the most bizarre symptoms was CRYING. I wasn't sad, it wasn't a reaction to my circumstances, I'm not crazy - it was a symptom and it's exactly like you describe, like someone died - this feeling of complete internal doom. This settled down after about a month. I'm curious about the Lyme. How were you diagnosed? Are they sure you have it? And finally, how was it being treated? There is a group of antibiotics (fluoroquinolones) that can cause some horrifying symptoms (crying included). I was on one -Levaquin- about a month before my STORM began and have wondered if it could have caused my issues. Just wanted to check if you had taken any of those? Hope you get some answers. We all know how frustrating and scary this can be.

Naomi

[lieze]

Steven I could have written your post.

I have felt the emotions you are feeling and I was a totally functional person before I got hit with something very similar to what you are describing.

I was very active-worked as a nurse in a nursing home-would get there at 6:30 and had so much energy I would buzz around that whole building power walking before my busy day ever started.

The fear and strange feelings that came along with this for me was unbelievable.

For example in 1999 I had a tonsillectomy.

I had no fear.

Went alone to the hospital with my things in a Walmart bag.

I totally trusted medical staff medical procedures.

Now I can't do something as simple as a test or procedure and I'm convinced with irrational fear that it's going to kill me.

I have the reoccurring thought I'm going to die too.

I think it must be related to the chemical processes in our brain.

Steven you are most likely going to be okay.

Even though what you are going through is very uncomfortable that feeling you are getting is false. I really believe it.

I think you are one of the first people to my knowledge that is expressing that same level of fear and emotion with this that I have experienced.

As far as drugs to stop that feeling-a beta blocker did it for me but my blood pressure dropped too low on it.

I have only tried Zoloft as an antidepressant and I ended up with a rash 2 weeks into it and had to stop.

Periactin is an antihistamine that also has a calming affect.

It is an antiserotonin drug.

When I tried a sliver I was amazed because I had a lot of stress that day and none if it was affecting me physically.

That fear left and I wasn't getting the strange "off" sensations that I often get in my stomach and chest.

I have not taken any more simply because I am required to drive some daily with running kids and it made me feel a bit intoxicated-but finally relief from all those feelings and sensations.

You may have to experiment to find something that works for you but I believe it is possible for you to find a medication that gives you some relief from some of these symptoms.

Hang in there!!! I have been dealing with this for over 2 years and there are many here that have been here much longer and we are still here.

It can get better.

[lieze]

When I described my symptoms to my allergist it reminded him of carcenoid syndrome I guess with eating I have trouble with that...serotonin gets released from cells and causes high heart rate, flushing, dizziness, he actually wanted to do a test on me for it but you have to go without bananas for 3 days prior to the test and bananas are one of the less than dozen of foods I can eat...after hearing my weight loss delimma continued reactions to foods that I did not show allergy to with my allergy testing he thought periactin might be an answer for me. It blocks both histamine and serotonin. Many if us have symptoms that mimic disease without the actual disease. I believe it's totally possible for my body to act like carcenoid syndrome when they may scan my entire body and not find any of these serotonin releasing tumors at all. I think it can be effective though to treat the symptoms and get relief. Funny thing about this abnormality is for me my symptoms often change-for instance one day I have trouble with food, the next I can eat but I get racing heart and shortness of breath instead.

It's enough to make you wanna pull your hair out.

[hyperpots]

Thank you everyone so far. Appreciate the responses.

Naomi, Levaquin is one of many drugs used to kill off Lyme disease. If your symptoms didn't start until after you were on this, then perhaps the Levaquin was like a bat and you hit the "Hornets Nest" so to speak. Levaquin as I know it does not make a person cry.

I defiantly have Lyme. I have positive Bands on the Western Blot plus I have a Positive PCR for a parasite called Babesia. Lyme Dr.. also thinks I have Bartonella. The Herbs I have been on target all 3 infections and everything I wrote above has exacerbated since being on these Herbs. I am in a holding pattern right now with the Herbs hoping what I am feeling is a die off (Toxin) reaction and I'm hoping it will subside as the days pass. Right now, I'm on my 5th day holding and NOTHING is subsiding. Very scared !

[HopeSprings]

Maybe the POTS (dysautonomia) is a complication of Lyme disease? I think Dr. Grubb has written about this. Since Lyme is treated with antibiotics, I just wondered if you had been on a quinolone. They can cause such extreme and bizarre symptoms - just thought I'd check. Hope that dysautonomia Dr. will have some insight.

[Katybug]

Steven,

Please know you are not alone and you are not crazy! Your story and mine are eerily similar. I was an Ops Mgr. for a Fortune 500 company 4 yrs ago. I started having all kinds of strange symptoms and was eventualy diagnosed with late stage Lyme, Babesia, and suspected Bartonella (although tests said no). I was treated by a Lyme specialist who subscribes to the ILADS treatment guidelines (I got the impression from your post that you most likely know what that is) and also with some herbal remedies. My symptoms would wax and wane. Last year at this time things took a turn for the worst and I eventually was diagnosed with POTS in Feb. of this year. The POTS specialist believes that the tick-borne illness precipitated the full blown autonomic dysfunction although there are some medical clues in my history that suggest there was a low lying autonomic or autoimmune issue lurking.

I am now on disablility but believe there is hope. I know it is hard but please believe that you can get better. There will be rough times and you will find on this forum that most of us are familiar with the symptoms you describe because we have had some combination of them at one point or another.

I just posted a thead a few days ago about chronic Lyme that you might be interested in. I named it "Information re:Bitoxin Illnesses". Here is the main link that was really interesting in case you aren't up for finding the other thread. http://www.betterhea...r-video-on-lyme

http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html

If you need support this is a great place to find it. I would have been lost some days without this group of wonderful people to remind me how NOT crazy I am.

Katie

[ramakentesh]

Mate your story sounds like mine and many others.

The good thing is that most people with these types of presentations seem to wax and wane over time so hopefully as horrible as it feels right now it wont last forever.

Id be talking to your POTS specialist about the adrenaline surges. They can be caused by a variety of things in POTS (or at least these are the theories provided) and your NE levels may not be indicative of their severity as in some forms of POTS you can have beta 1 supersensitivity and/or problems that intensify your bodies reaction to normal levels of Norepinephrine. Also when your body is suddenly sensing bloodflor disregulation it shoots of adrenaline to try and correct it.

When Im that hyper - and it only occurs when I relapse - I take betas and try to keep active. Once the adrenaline settles down, i start working on improving the dizziness and orthostatic intolerance. If you do that now your just gonna feel worse and worse.

My other advice is no matter how bad you feel now, usually most improve with time and the best thing you can do is try and keep moving, especially in the morning.

[hyperpots]

I had someone PM me and they told me how my symptoms were exactly the same as theirs. I have so many meds here b/c I've seen so many Dr.'s, but none of them have gotten the right combo. So, going from being on nothing, I took 0.2mg of Clonidine last night before bed plus 50mg of Benadryl + Zantac 150mg. I slept pretty good.

Still woke up with the Jaw clenching and some weird stuff in the head, but overall, a bit better, or not as bad, hard to figure out which way to say it.

Got up and took another Zantac and Clonidine 0.1mg. The stuff is sedating. Hard to sedate me too, so it must be working on something.

I was reading on how when upright, we can get Cerebral Decrease in Bloodflow. It sounds exactly like what I have been feeling. Perhaps this is why I feel off balance when I stand still, but not when I walk. Even the G force of driving gets rid of it, but I feel it at a red light.. Standing still and sitting Erect are no good for me.

Now my legs are feeling real weak like I have MS or something. It's always something. Now I'm wondering if I need exercise or if this is yet another symptom. I have been doing alot of sitting around lately. ? ?? who knows....

Def. not as bad today.. I'm seeing ANS Specialist on Monday.. Forgot if I put this in Original post. Hopefully, he can help me.

Thanks for your posts everyone..

Steven~

[potsgirl]

Hi Steven,

Welcome to the forum! It will provide good support and information for you, I hope. I was a little concerned to read about one of your eyes drooping and the thick discharge you're getting. That sounds like it may be something for a neurologist, eye doctor, or your PCP to check out. A lot of us tend to throw every symptom into the 'POTS' bag, but sometimes you need to get things checked out that may not be caused by autonomic dysfunction.

I'm wishing you well, and good luck on your appointment Monday. Please let us know how it turns out!

Jana

[lieze]

I had that thick discharge a couple days ago.

It was thick and milky looking

My vision was also a little blurry that day.

I noticed the discharge for 2 days and then it went away.

I agree that anything that doesn't go away on it's own like that probably needs to be checked out.

[Annaliese]

Hi Steven

I read your story and i can completely relate. My dys started suddenly after c section and oh my word was i sick. My sister actually told me not to talk in appointments because i sounded a bit "knocked off" and she didnt want the drs to assume i was a psych patient! One of my biggest prolems apart from a 150 hr and high bp was whiteknuckle anxiety, i behaved like someone straight out of that trainspotting movie. And there's only so much you can take of high adrenalin levels before you just cry hysterically like as you say, someone has died. I did the hysterical crying thing for months and my partner would have to dress me and haul me up to the car and take me to a public place so that i would calm down. Not happy days. Things started to improve after my dr wanted to put me on some dodgy drug that causes facial twitching and admit me to a psych ward. It gave me a real kick in the arse. I thought, who are these people trying to put a neuro patient (i had already been diagnosed as having dys) into a psych ward. I got REALLY angry and thought if i dont start working out what is wrong with me nobody will. So i decided right then i would read EVERYTHING i could get my hands on wrt dys. I also ditched the crap drs and found some new ones. Within a couple of months i had discovered that my beta blocker really needed to be taken in the afternoon also. With this small alteration in meds my crying HALVED! I felt so much better. Anyway, i could go on but my points are 1) read alot 2) join as many help groups as possible 3) dont lose hope because a better treatment halving your symptoms might be just around the corner 3) get rid of crap drs and keep seeing new ones until you find one that helps 4) in addition to neuros, also see haemotoloists, immunoligists and physicians 5) get a really good GP as they quite often make the most diff in terms of locatin good specialists 6) remember you are not alone. Keep us posted on how you go.

[sandymbme]

Steven-

I think most, if not all POTSies can relate to the emotional swings, and attendant symptom "surges" that go with them. Stress plays heavily on POTS, exacerbates it to a large degree. Dr. Grubb has told me every time I see him that managing stress is KEY to managing our symptoms. One of the many reasons a lot of us are on SSNRI's or SSRI's. (From Prozac to Cymbalta, most of us take something to not only help manage the stress, but this class of drugs seems to aid the treatment of both POTS and migraines, although they are not sure why, exactly.) Not to mention a lot of us experience widespread pain with POTS. Nothing you are describing is that out of the norm for POTSies, except maybe the eye thing which I agree with Jana- you should get that checked out ASAP. Sometimes we do lump everything in with the syndrome, and it is not always the cause of all our problems.

I am so glad your friend told you about us. You could not find a more supportive, positive bunch of people. I am so sorry you have to be here, but if you are going to hang on to a semblance of normalcy in your life, having a good support system is key. I have found this forum to be invaluable, and I hope it is as great for you!

Sandy

[Serbo]

Steven - Just a quick post for support.

I'm a guy, also in a high stress job for a big Pharma company.

when the rushes 1st hit me, i couldn't even look at my work PC (even when working from home) without big surges, maybe 3 or 4 in a row until i lied down. Could physically do no work. The stimulation of trying to engage with a PC caused my nervous system to go haywire. I didn't take any meds for this for this or POTS for some time as no body could work out what was going on.

Over a week or so the rushes settled and i could get back to doing some work at home, horizontal with the laptop in my lap. i found that working later in the day, e.g after 8pm helped. Perhaps as body was in a tired state there was less to get stimulated about.

I had to take a week off work initially just to get out of the stress feedback loop of work. It has now got better over time and getting back to reality.