I'm Not Sure I Can Handle Another Pots Crash

[Maxine]

I've been kind of holding off from posting to see if what has happened last month was a false alarm. My hormones are changing, but my PCP said as long as I'm having periods then I have estrogen. I'm not sure where his head is at, but I have been having abnormal period cycles for over a year now. I stop for months, then start back up again. The first time this happened I seemed to have normal periods. The second time this happened my periods got heavier, and I had a virus. I didn't seem to have the adrenaline spells the first time around, but this time I AM!

I did have a virus last month along with this, so I blamed the virus. However, my period was heavier as I said, and my BPs were low----even sitting. So I figured it was my body compensating. It was so bad I felt like I was going to pass out, and I could feel the heat of the adrenaline. I felt like I was going to have an asthma attack---my breath felt like it was being sucked out of me, even as I was trying to relax and take regular breaths. It was such a short attack, I thought it was just a combination of stress from the virus, and the heavier period---hormones ect.

Today I noticed my heart rate jumping up into the 80s, from my usual upper 60s/low 70s. this in on my beta blocker. Then I noticed my heart rate jumped up to 92, and my BP was 100/87. I got up to change into my jeans, and I felt the heat of the adrenaline again. Then the heart pounding---and the heat of the adrenaline surging more----then the same breath being sucked out of me again. I curled into a ball to try to keep my blood flow in my torso, but it was hard because I'm so bloated---(pre-period bloat, as bowels have been working OK-----so it's all pre-period BLOAT---massive). I feel slightly dizzy, but the dizziness passed after the adrenaline stopped, then my head felt better. I'm still shakey, my pulse went down to 88, but BP is now 137/78. I took a klonopin----a half. I'm wondering why my heart rate is still up even after klonopin. This is usually something that puts these spells to sleep.

Last night I decided to sleep with my husband. It's not that I don't want to sleep with him otherwise, it's just that our bed is horrible for my EDS ridden back. Especially if we sleep together. My spine gets so twisted I don't know what to do. I felt like I was coming out of a coma when I woke up, and I decided to wash my hair right away before I felt worse. It felt like someone kit me square in the middle of my back---it feel broken. the only think I know wrong on the thoracic spine is the desiccated disk on T-8. This bothers me so much, but the focus has been on the cervical/cranial instability that no one seems to get it except an orthopedic surgeon in Cincinnati. MY EDS geneticist gets it and knows it's real, and so does Dr. Mcdonnell from NIH. However they're not surgeons.

Thinking about surgery--------I don't know if this would fix the complete problem, and it might create more------this is why we have been trying conservative measures. The orthopedic surgeon is going to try a new CT scan where they rotate my head to the right, and then the left to see if this shows the instability more then the other tests have.

I'm so fearful of another POTS crash, my body can't handle it. I have been so stressed from my brother's passing, my friend who died recently---(from what is thought to be complications of her EDS-----still no autopsy report to confirm), and then seeing the mounds of medical files on my mother that shows clearly that there was egregious negligence in her care over a period of years, and a clear indication of cancer long before the 48 hour notice that she had terminal cancer before she died.

The holidays were nice, but very different then what our family is used to with my Mother, Aunt, and my brother gone.

I'm feeling totally overwhelmed, and have no clue who can help me with this. I just saw Dr. Grubb, and soon after that my geneticist. Of course my first spell was after seeing Dr. Grubb, and just two days after seeing my geneticst. I always seem agitated before this hits me, and I have big mood swings as well.

I'm nervous about the narrow pulse pressure I had just before the spell hit me. I took a klonopin, and I can't believe my heart rate is still mid to upper 80s---low 90s. Klonopin always calms things down if the beta blocker isn't enough. This is just nuts. I feel so jittery----ELECTRIC! My spine is buzzing, and I wished I knew the answers, or some decent doc somewhere would be kind enough to actually help me.

I'm continuing the klonopin as I need it. I normally have taken half my dose daily for almost 4 years------but I won't sit though these spells again, so I'll do what I need to do. I just took my BP again with HR, and it's now 124/67---pulse went down to 78. I normally don't do this often, but my body feels out of my norm.

Any words of wisdom would be greatly appreciated.

Maxine :0)

[firewatcher]

The only advice I can offer is to TRY to stay calm. Don't do anything that would exacerbate your symptoms. Take it easy for a few weeks and be diligent with your meds. If you feel that "wrong," call your doctors! Take care of yourself!

I'll offer specific prayers and good thoughts for you (that list is getting long!)

(((((((((((((((((((((cranial stabilizing hugs)))))))))))))))))))))))

Jennifer

[Maxine]

(((((((((((((((((((((cranial stabilizing hugs)))))))))))))))))))))))

I love it............thanks for your encouragement.

The part about calling my doctor.................hmmmmmmm, now that is difficult since the doc for this is Dr. Grubb, and he's not going to be able to see me. He just saw me about a month ago. I basically talked in circles when I saw him, as I have too much going on, but ried to focus on the POTS. However, the pots is secondary to the EDS.....so what can we do about that? I wish doctors knew more about EDS. I do need to get hormones checked. It's time to go see my gynocologist, and have my hormone levels tested.

I should get a check on my catacholomines. My dopamine levels were above normal the last time in 2006.

[Maxine]

Well I do see a lot of views, and I appreciate that you took the time to read. However, I'm interested to see if anyone has had these narrow pulse pressures while having a spell like this. When my tachycardia kicked in I didn't take my BP, as I never want to know how hihg my tachycardia gets because I don't want the anxiety. It's too hard on me, as I've never been one to do well with full blown tachycardia, especially when it over rides my beta blocker. Even when I took my klonopin I still had a high heart rate. I did have a slight fever of 99.0, so I'm not sure if that had anything to do with it.

Anyway, when the heart pounding tachycardia kicked in the pulse in my neck felt weak and narrow. Could it be that my BP dipped so low in the morning that all this happened becuase of this? I've had BPs much lower then this before, and didn't have this type of reaction. I felt dizzy in the morning, and my BPs were 93/68 on average, and this was sitting. Standing it fell a little more to 90/something. I started to feel the heat of the adrenaline in my shoulder blades, and then felt is surging through my body.

Another thing, I'm wondering if my thyroid levels are too high now, and my thyroid meds might be too strong. I know your're supposed to take it on an empty stomach, but I have always taken it around noon to 1:00pm, and not on an empty stomach. I called the pharmacist a long time ago, and he said if I have been taking it this way, and have had normal thyroid levels then just continue with the way I'm doing it. I can't remember if I took it on an empty stomach yesterday. My husband went to Bob Evens to pick up a couple of pancakes for me, and two pieces of bacon (I was craving salt). I think I took it before that, on an empty stomach. Maybe I was dehydrated----maybe I needed more fluids? I always drink a lot of water first thing in the morning-----I don't remember if I did this yesterday morning. I felt bad the moment I woke up. I'm having so much trouble from my mid spine, neck/cranial area, shoulders, sternum----the whole area is a wreck. Of course I have the changing hormones also.

I do feel really concerned that my pulse in my neck was so weak. This has happened in the past when I had these spells.

Maxine :0)

[skyblu]

Maxine...perimenopause can be causing some of your problems. It's possible you're having hot flashes which can increase adrenaline and mess with your HR. And make you feel miserable. Your hormones are fluctuating right now and it can make you feel awful. I used to get so sick when I got bad hot flashes. Some were OK but others knocked me out and left me feeling sick for hours afterwards.

Also I'd lay off the bacon if I were you and eat other salty foods instead. The nitrates in it can make symptoms worse.

[Maxine]

Maxine...perimenopause can be causing some of your problems. It's possible you're having hot flashes which can increase adrenaline and mess with your HR. And make you feel miserable. Your hormones are fluctuating right now and it can make you feel awful. I used to get so sick when I got bad hot flashes. Some were OK but others knocked me out and left me feeling sick for hours afterwards.

Also I'd lay off the bacon if I were you and eat other salty foods instead. The nitrates in it can make symptoms worse.

"lay of the bacon?" LOL----sounds like I eat it a lot. I never buy it, as it would go bad because we just aren't bacon eaters. On occasion I get a craving. Can you imagine chocolate covered bacon--------------------In Minnesota they have it-------------------how nasty is that--------LOL.

Thanks for your reply and help........... I rarely eat bacon----maybe 5 times a year...........and I never get symptoms from that. I might if I ate a lot in one sitting, but I never eat more the 2 or 3 pieces. Hot flashes don't cause problems with my POTS. I just feel a heat wave, and that's about it. I've had hot flashes for over a year now-----they come and go.

I'm thinking my synthroid might be causing it. I never had symptoms on the 15 years I've been on synthroid, but it might be changing now that my hormones are changing. I took my regular dose today, and sure enough my heart rate increased, and I felt anxious, but not too seriously this time. I took half of a klonopin, only because the rest of me physically isn't up to fighting the tachycardia. Yesterday I developed a sudden adrenaline surge of adrenaline, then BOOM----tachycardia. Today the adrenaline was more of a simmer, but I didn't want it to get out of control.

I'm in no mood for this at all----too much on my plate right now.

Maxine :0)

[Guest tearose]

Hi Maxine,

I had surgical menopause and chose to use estrogen for 9 years. Estrogen was helpful for me until it stopped being absorbed properly and then I became a basket case! I had hoped to stay on a small dose for another 10 years, but the problems were bad. My POTS symptoms were less manageable. I went cold turkey off them and was ill for about two weeks and finally found a new normal which is okay.

Please hang in there. Getting "older" is not for the weak of heart!!! I can only reassure you that these bad times will pass.

hugs,

tearose

[Maxine]

Thank you Tearose-----thanks for the hugs and encouragement.

Did you have more heart issues with peri-menopause? Today it happened again. I coudln't sleep intil 5:00am, and out granduaghter came at 10:00am. WE had her for about 4 hours. My husband helped a lot. She's 2 years old on Jan. 20th, and very active. My husband drove her to her mother, and was going to go to the store.

I went to pick up a few things and looked forward to a nap. I felt the little quiver with my heart, the it felt irregular, then adrenaline, then more adrenaline. Then I got on the floor, and crunched up into a ball to try to keep blood in my chest. My heart was still beating fast. When it does this the very fast HR last a about a half a minute, then it's just fast, and tapers down. I took klonopin to calm my nerves. I still feel some palpitations----its like a sudden thud.

I was so twisted up in the bed new year's eve night, and by new years's day morning I felt really bad, like I couldn't breathe---the pain is so bad in my mid back. I'm not sure how thoracic spine pain ties into the heart, but I know it can. My disc on T-8 is gone----so it's bone on bone. Today I have the same pain. Yesterday i just had a slight surge of adrenaline.....not that bad, by my back apin wasn't as bad either.

I just had a cardiac echo done in Sept. and it was good-----Ejection fraction of 55----all was normal except for some mild regurg in mitral and tricuspid valve, I'm on an ice pack on mid thoracic spine right now, and I can't even feel it.

I know that I have the intermittent brain stem compression depending on how my cervical/cranial instability is behaving-----one of the functions of the brain stem affects the heart rate and rhythm. I know this might be TMI -------but this is how it is for me----part of it anyway.

Maxine :0)

[Guest tearose]

I would have to say that my heart issues have changed.

I don't get the long runs of arrhythmia.

I do get very serious PSVT runs if I dare stand several minutes without compression...so I don't allow that to happen. No more ttt for me!

I do now know I have had three incidents of Prinzmetal Angina which is a "brings you to your knees" type pain...I have to be very careful in the cold weather, this is when these can come. Overall, my heart does well if I can maintain my body temperature, hydration, bp, and rest. If I do too much, or am too cold or too hot or fatigued or eat too much salt, or don't keep electrolytes in balance, then I bring on heart pains.

I am actually much better managing off the estrogen. I have to get up during the night but that is usually to use the bathroom. I wake up a lot during sleep. I had a sleep study and my ANS fires up terribly during the night. They believe it is an early/fast ANS burst that helps keep my bp from dropping any lower. I just have to live with non-restorative sleep and daily naps or a slower pace. It means my active live hours are less but I hope to live longer by not messing around with drugs.

hope this helps,

tearose

[Maxine]

Still have a low grade fever of 99.2

[Guest tearose]

So your temp went up from yesterday...hmm

Have you had any dental surgery lately?

Any signs of infection anywhere?

[sue1234]

Sorry you are in a bad episode! I know how very FRUSTRATING it is to feel that way and not know why!

I really believe female hormones can make things alot worse, or better if they are optimized, I guess. I just don't seem to ever get optimized! I have about 2 periods a year, and they can make me feel my worst AND my best within a week.

If hormones are the case, just know it will swing into a better place soon!

[Maxine]

Thanks so much!

I posted about my temp. last night, but went back in to post more, then I never finnished it. This morning I woke up and there was my post sitting in idle, so I just hit the X.........

Tearose, I saw my PCP on the 16th, had full CBC done on the 17th, and all my blood work came back normal except for slight elevation on BUN. doc wasn't concerned about it----said it was still normal. Or was is slighly low.......hmmmm??

My temperature in normal this morning------------98.2. I know this seems weird to keep such a close eye on my temp, but my norm is 97.5---around there.

This all seemed to get worse when I woke up Friday---(new year's day) morning, and my spine was so twisted. My mid thoracic spine had problems too, and the T-8 disc is gone----bone on bone. the pain goes though to my chest. Since this my adrenaline seems so unstable. This morning I got up feeling better with more sleep, but when I took my BP it was fairly normal. then I stood up and it fell to about 92/something----Hr in the upper 80s. Then my next BP went up to 106/75. I took it again, and it fell to 78/68! HR was still in the 80s---but lower 80s. One more time------it went back up to 100/something.

I was debating on weather or not to take my synthroid---thyroid med. Yesterday I didn't, and that was when I had the worst attack----but I was on 3 1/2 hours sleep after a stressful night. The day before yesterday I didn't feel too bad, but still felt mild adrenaline surges, and increased heart rate after taking synthroid. I never had this before with synthroid, then today I took it again and heart rate jumped 20 points, and BP went up to 136/87 and HR was 87. I know this isn't bad, but this is odd to happen after synthroid. I also felt mild adrenaline surges. I still feel like someone hit me in the middle of my back with a big log.

Today I called my PCP to have full thyroid levels---along with thyroid antibodies since I have hashemotos type. The last time antibodies were checked they were 1200............. Better then my usual that's around 1600-1800.

I forgot to add that a 5 year old--(not my granddaughter) gave me an awkward hug where she decided to hang her body weight from my neck the week of Christmas. I really haven't felt right since----but didn't start with these adrenaline surges until New Years day. Not a way to start the new year for sure. what am I going to do----get an MRI when something like this happens. the pain was really bad at first---worse then my usual. Now it's back to around my usual....so no sinse getting another MRI, I'll be having a CT scan done on the 19th. i think this holiday season my body took a beating. Next year I'm laying low.

My last period was Dec. 8th. I'm dreading the next one----this is when I had a bad adrenaline surge.----------just three days after----the day after teeth cleaning. I just called my Gynochologist, and she'll see me on the 22nd. She'll be checking hormone levels.

My head is spinning with all this. Tomorrow I see my therapist----I'm not missing that.

This is such a struggle.

Maxine :0)