Weakness, Fatigue, And Confusion

[Rachel]

For a couple of weeks now I have really been struggling with my health. At first it was just extra weakness and fatigue. As that grew worse, really bad brain fog began to set in as well. Everything continued to get worse, and the brain fog turned into periods of confusion. I had difficulty communicating and didn?t understand things well. I have been extremely sensitive to sights and sounds (even more so than usual), and the weakness and fatigue has grown super intense.

Usually with rest this will go away. But instead it kept growing worse. Our neighbors had to watch our children on several days while my husband was gone. Finally, I had to call my mom to come. I?m now in bed 20-22 hours a day. I get up when I can, but my body is so weak and my head so sensitive to sounds that within an hour of being in my recliner I have to go lie down in bed again. I can only hold my daughter in my lap for five minutes. I can barely read one easy book to my son.

Even when I am lying down it feels like the perfusion of blood in my brain is not what it should be. While lying down I have felt like I am on the verge of fainting. I have been freezing cold for hours at a time. When I go to sit down I often fall the last few inches because my muscles just absolutely give out on me.

A lot of my symptoms seem to fit with a very severe silent migraine. Or it could be something more serious. We just don?t know.

All I do know is that this is not normal for me, even for a POTS hole. It is normal for me to always be weak and tired and brain fogged, but the intensity has at least quadrupled, and it is not getting much better with rest. It has gotten a little better, but the improvement has now stopped. This is so weird. I feel like I?ve been picked up and dropped in someone else?s body. Something is really messed up, and I don?t know what to do.

I am contacting my team of doctors, but if anyone has and suggestions for what to do, what tests to request, or for what might be going on, please let me know.

We need help.

[Christy_D]

Have you had your Vitamin D checked recently? My son bottomed out last February, and was in bed 20+ hours a day. After finding his vitamin D below 10, he started vitamin D supplement. Within one week of taking the supplement, he was back to his normal POTSY self, out of bed by 12 - 2.

That's the only thing I can think of, I'm sure there are a ton of other possibilites.

Christy

[Noreen]

{{{Rachel}}}

I was just going to offer support as your symptoms just like what I was going through last winter. It is impossible to describe the psychic pain when you can't use your brain - e.g. using a computer is tough even though you've used one for decades.

I was also dx'd with low vitamin D (again) and took the high doses at around this time. Christy might be onto something there. I can't say that I noticed immediate improvement but there definitely could have been a correlation - I need a wife or mom to help me make those connections - lol.

Have you been dx'd with fibro? .Your description sounds like a bad fibro flare. Possibly the change in season approaching has something to do with it. for fibro, heating pads are wonderful - heated mattress pads are great. Just thinking out loud here.

I hope you find an answer. In the meantime, positive energy and prayers headed your way.

noreen

[lissy]

Wishing you relief from this soon...I'm not too sure what could be going on with you, I just know it sounds familar to when I had postpartum cardiomyopathy( severe heart weakness)it happend after having a few of my children but can happen for other reasons. So I'd suggest maybe a echo to check EF.

Lissy sends prayers to you!

[juliegee]

((((((((((Rachel)))))))))))

[roxie]

((Rachel)))

I really have no clue what it could be but a migraine is possible, I had a migraine for over a month a few years ago & was in the hospital to treat it.

Have you changed any meds?

Do you think it's a reaction to one of your meds? Sometimes I have sudden reactions to me mess & need to change the dosage

[Guest tearose]

Hi Rachel,

I am sorry you are in the potshole so deeply. It sounds like everything is a challenge right now for you. Just try to manage the best you can and when you are able find little ways to make tiny improvements. While laying down try wiggling your toes or lifting your legs. Try to increase some electrolytes and do nibble on small easily digestible things.

I once had a cold that went on for about three weeks and triggered a major relapse...like you are describing you feel now. As I recall, I needed to use a walker and was unable to drive for a month. I was just a ragdoll. I slowly made small improvements and in two more months was back to my seat cane and regular management level.

Even though I too was more foggy headed, I found that mental stimulation was very important. I listened to a lot of Mozart to stimulate my mind. I did word find puzzles too.

I hope your doctor can help you figure out what else to do to bring you around again.

with loads of hugs and best regards,

tearose

[jem15]

Funny you post this now. I've been going through something somewhat similar, though not the exact symptoms. I have had an extreme worsening of symptoms, not like my usually POTS worsenings. I have weakness, fatigue, faintness, and intense feeling of heat. I also started to get shortness of breath the other day, which is not a usual POTS symptom for me, and they sent me to the ER. Also, my legs/feet started getting much more bluish (not the usual slight discoloration in my feet that i get when standing or still), and my legs and arms were all like blotchy and "mottled" looking. Now it's calmed down to a little more reddish/purplish but still weird.

Anyway, I have been sick a few times now this summer, this is the 3rd time, and I feel kind of "fluish" as opposed to simply POTSy. I also have nasal congestion/my ears feel clogged. It's been 2 weeks so far that the symptoms seem so bad. I have to lie down all day pretty much, and if I try to do anything, I get worse. The faintness/weakness is the worst symptom for me. So I'm wondering if it's a virus causing the symptoms, and/or a virus causing a severe worsening in the POTS symptoms.. especially now since my circulation seems all funky. Anyway, don't know if that's what's going on with you, but with me, it's the only thing I can think of right now that seems to be triggering the worsening. Normally my symptoms get worse when sick, but has anyone experienced new POTS symptoms they havent had before, or just a more severe kind then they usually would when sick?

[lissy]

Funny you post this now. I've been going through something somewhat similar, though not the exact symptoms. I have had an extreme worsening of symptoms, not like my usually POTS worsenings. I have weakness, fatigue, faintness, and intense feeling of heat. I also started to get shortness of breath the other day, which is not a usual POTS symptom for me, and they sent me to the ER. Also, my legs/feet started getting much more bluish (not the usual slight discoloration in my feet that i get when standing or still), and my legs and arms were all like blotchy and "mottled" looking. Now it's calmed down to a little more reddish/purplish but still weird.

Anyway, I have been sick a few times now this summer, this is the 3rd time, and I feel kind of "fluish" as opposed to simply POTSy. I also have nasal congestion/my ears feel clogged. It's been 2 weeks so far that the symptoms seem so bad. I have to lie down all day pretty much, and if I try to do anything, I get worse. The faintness/weakness is the worst symptom for me. So I'm wondering if it's a virus causing the symptoms, and/or a virus causing a severe worsening in the POTS symptoms.. especially now since my circulation seems all funky. Anyway, don't know if that's what's going on with you, but with me, it's the only thing I can think of right now that seems to be triggering the worsening. Normally my symptoms get worse when sick, but has anyone experienced new POTS symptoms they havent had before, or just a more severe kind then they usually would when sick?

Yes I agree with pots being worse with viruses, and I do know I had extreme shortness of breath in the beginning of my illness that lasted about 4 months and it disappeared it has happend maybe 3 or 4 times for seconds that was the scariest feeling. The mottled look LOL I've had that ever since this began it only goes away when I lay down or if I'm extremely warm. I haven't gotten any new symptoms they have all stayed the same (besides the breathing issue) they fade and explode but are mostly always there.

[jem15]

thanks lissy, helpful to know! it's weird, my other POTS symptoms have been so constant, same symptoms that get worse for 15yrs, that's why this kinda threw me this last time. But if i think of it, I guess as things progress, it's not so unlikely new symptoms may get added with a viral trigger, or worsening of some of the old. Ha, the mottled thing is freaky;-) I'm used to just my feet looking weird, so when it was like all over and darker, I was like, what's going on? Knowing it can be a POTSY thing is helpful, thanks.

[firewatcher]

((((Rachel))))

Could any of it do with sleep deprivation? I am a total basket case when I am sleep deprived, and I cannot think of any bigger drain than two little ones. I spent most of their baby years in a complete fog. The other thoughts were thyroid or mono. Just get it checked out, maybe it is fixable. Children are a huge, ever-increasing strain on your time and energy and it can wear you down to nothing (almost there myself.) If I had any extra energy, I'd send you some...

[MomtoGiuliana]

Hi Rachel--so sorry that your symptoms have worsened and are so severe. Maybe it is a very bad flare up? and if so, you will come out of it and back to your normal. Are you breastfeeding and has that slowed down? I know for some people, stopping breastfeeding can be a major trigger. I agree with firewatcher about the energy we expend on young children too.

[potsgirl]

Rachel~

I am very sorry to hear about your health taking a turn for the worse, at least temporarily. I would certainly have my neurologist check things out, since you're having a lot of confusion and other neurological issues. I can related at least somewhat, since about 4 months ago I have developed chronic pain in my feet and hands (they're pretty sure it's amyloid associated small fiber neuropathy - more testing soon) and it's making my life miserable as well. I'm heading for a chronic pain clinic...hopefully very soon.

Get in to see your team as soon as you can, and perhaps they can shed some light on what's going on with you, and figure out a way to make things better. I know sometimes I get very fatigued and will need a 'bed day' off and on, but it once a week or two is frustrating for me, every day must be very difficult for you!

Hang in there. I'm sure they'll get to the bottom of this soon, and you'll be up on your feet again.

My best,

Jana

[Sarah4444]

Your post describes how I have been feeling this summer too. I saw a lovely young neurologist who was familiar with POTS and she felt that many of the cognitive symptoms, as well as some other things I have been experiencing such as breathing and swallowing problems, could be the result of various parts of my brain being deprived of oxygen. I'm well into the POTS process but not even offically diagnosed, so will watch this thread with interest. It's awful when it takes too much energy to even interact with your children, isn't it.

Sarah

[Rachel]

Thank you, everyone. I'm glad I can always count on my DINET friends to help me out.

I'm a tiny bit better than yesterday, which is encouraging. I think I was in my recliner for close to three hours today! I haven't had any of the severe brain fog/confusion for a few days now, but I am still very weak, tired, and more faint feeling than normally.

I called my local cardiologist yesterday, and she called me back within half an hour (love her!). She has raised my dose of midodrine up to 15mg, which of course is only a temporary solution since the FDA is taking away midodrine. If things don't improve with the higher dose then she will send me to a neurologist. She also said that severe silent migraines are a definitely possibility based on my symptoms.

I emailed Beverly yesterday, and she told the office staff, "Get this girl in here within two weeks." So we'll be going to Toledo soon. I can't get in with my mito specialist (also a neurologist) until January, but I'm on the wait list if something becomes available.

Christy, I had my vitamin D checked earlier this summer, and everything was good. Unless it can bottom out suddenly, it should still be okay. I'll be going to the doctor soon, though, so we can see about doing more blood work then.

Noreen, I haven't been diagnosed with fibromyalgia. I have some friends who have it, and their pain symptoms are much different than my pain symptoms, so it doesn't seem likely.

Lissy, I read about cardiomyopathy, but the symptoms don't seem to quite fit.

I hate bananas, My medicine hasn't been changed in over 8 months. No simple solution there.

Tearose, Thank you for the suggestions to do simple exercises in bed. I started wiggling my toes while reading.

Caterpilly, I did get a cold, but it wasn't until after the worst of my confusion and weakness symptoms were gone.

Firewatcher, I did have my thyroid checked recently, but it has been a very long time since I was tested for mono. Sleep depriviation is a possibility. I haven't been sleeping as well for the past three weeks. It could certainly have made things worse, but I don't think it would have made things as bad as they were/are. I'm doing worse now than I was with a newborn 9 months ago, when I was doing half of the midnight feedings and getting even less sleep.

And, actually, now that I think about it, my sleep schedule didn't change all that much in the past month. My husband usually stays home at least three mornings a week so that I can sleep in until noon. This semester (started two weeks ago), he has class at 11 or 11:30 most mornings, so I had to get up a little earlier. I still slept in until 10 or 11 most days, and on a couple of mornings our neighbors watched our children for me.

Katherine, I weaned Adelaide 7 months ago (my body didn't last long for breastfeeding). You may be right that it is just a bad flare. I may have pushed it too hard all summer and then my body just finally said, "I quit! Go to bed!"

Jana, I will definitely be going to my neurologist as soon as I can. He's awesome, though, which means I have to wait a while!

Sarah, I hope that you can get an official diagnose soon and find the answers that you need.

Thank you again, everyone for your help, advice, hugs, thoughts, and prayers!

Rachel

[MomtoGiuliana]

Glad you can get in to see drs soon. hope the med adjustment helps you. With your bp improved hope you can be upright more.

I can relate re breastfeeding. I started to improve when I stopped breastfeeding. Oddly, this seems to be the opposite for many other POTS-ies.

Flare-ups are so maddeningly hard to understand. There often aren't obvious triggers for many people.

Hugs!!

[Rachel]

I seem to be improving. It is very slow, much slower than normal for me, but it's coming. Yesterday I was able to be in my recliner for a total of nearly 4 hours! I also was able to lie on the floor and play a game of Memory with my son, and I had some energy to play with Adelaide too. It was so good to spend some quality time with my children again. I have missed them so much.

The improvements I'm making are pretty slow, so we are still going to have a lot of help from my mom over the next copule of weeks. A friend from church is also organizing full time help for me for after my mom leaves.

My goal over the next few weeks as I have appointments is to try to figure out what caused this flare up (if a cause can even be found), and get a plan for what treatments and/or tests to do the next time this happens.

Rachel

[Noreen]

Rachel-

That's good news - Hope you continue to improve!

your plan to be prepared for a reoccurence sounds like a good one. I have thought an action plan in a binder would be a good tool for use when the fatigue and brain fog is impossible. I haven't gotten there yet/

[runningshoe]

Nothing ever stays the same - this will pass - stay hopeful - I know it is hard but you have been through so much before.

[Neshema1]

Rachel

I so hear u. I'd write more, but I am too tired, after sleeping 3 days. I have severely low blood volume, dehydration, high NE, untraceable D without huge rx supplementation. If i sit 3 hrs in the recliner, it's a good day. I have had a lot of cns symptoms, but no clear explanation. I kind of wonder if the blood volume and dehydration cause it. Mito is under consideration. Did u see the mito doc? did I miss what makes you improve? Did Beverly find something that worked for you?

Reen-i have similar autoimmune issues. I believe they can contribute to cns issues.

So, it's gonna pass? When? How? I'll try the "hope" one again.

[Rachel]

Hi Neshema, thanks for asking how I'm doing. I've been wanting to post an update for a while, and your post was a good reminder to me. It has been hard for me to know what to say in an update. There is still so much that we don't know about what has been going on with my dysautonomia this fall. I had a huge crash, but we don't know why. There aren't any test results that have given clear answers.

It was good for me to read back through this topic, and especially to read my frist post. It seems to me that I have barely improved at all. I don't notice an improvement in my health from week to week. However, as I look back month to month, and as I read what things were like in August and September, I can tell that I have improved some. I am definitely not back up to my previous baseline, but I am at a more functional level.

My cognition has improved. I am not struggling with brain fog as much as I was. Blood flow to my brain is better. I no longer feel like I am on the verge of fainting even while lying down. I am still more weak than I should be, but I can move around the apartment again, and my muscles don't give out when I go to sit down. My sensitivity to sounds has improved, and I'm so glad we don't have to talk in whispers anymore!

I still have a long way to go, though. I'm unable to get out of bed before noon most days. I have to be in bed for about 18 hours a day (better than the 22-23 that it was!) I rarely leave the apartment, and when I do it is only with help. Minimal activity wears me out. I still have more difficulty than normal with email, talking on the phone, writing letters, and typing posts. It is hard to think clearly enough for long enough to get it done. I still need full time help here at home (to take care of myself and our children), so we're still trying to figure out how to make life work financially and physically. It's challenging.

In the past few months I have seen/spoken with a lot of doctors and had a lot of blood work done. The only thing that came back showing a problem was my vitamin D. It was low, but just barely. I didn't have my vitamin D checked until September, and by that time I had been indoors for a month. We live in the corner of a rock wall and woods, so we get very little sunlight in our apartment. I think my D was just low because once I crashed I was bedbound/homebound and never saw the sun. All of the other tests came back normal.

From what we can tell, the crash just seems to be purly dysautonomia (or mito) related. Something caused me to crash, and my ANS just went haywire. It really messed me up. At the time of the crash I had some really weird symptoms start up too. My skin has been peeling, especially on my palms. It isn't dry and peeling, it is normal and peeling. At times my palms have been sore because too much skin had peeled off. My face became more oily. My body odor increased. Overnight my GI tract switched from very slow motility to diarrhea. For almost 4 years I have had to take Amitiza or Miralax to tell my guts to move. And then suddenly I had the runs. I've seen several doctors, and they are all baffled by the symptoms. Nothing appears to be wrong other than dysautonomia.

It was really good to talk to Beverly. She did change a couple of meds (added a migraine medication and IV saline infusions). She tried to start me on Octreotide and home oxygen, but my insurance denied them both.

I have seen a local neurologist and gastrointerologist. They have run neurological tests, an EEG, and bloodwork, but everything is normal.

I will be seeing my mito specialist in January. They weren't able to get me in any sooner than that. However, they did go ahead and start me on a mito cocktail. The CoQ10 has been beneficial to me. I'm taking 800mg a day.

My local cardiologist ordered IV saline 3 times a week, and that has been helpful. A nurse comes to my home three times a week and starts a peripheral IV for the infusions. My cardiologist also recently started me on florinef, but today I had to stop that med. It is causing too much intraocular pressure, and my eyes have been hurting for 5 dyas now. I'm disappointed that I can't continue to take it. I really noticed a difference after being on that med for two weeks. It was my hope that I could just do florinef and be able to stop the IV infusions, but I think I'm going to have to continue with infusions long term.

My neurologist is monitoring my migraines and sensory overload. He started me on Elavil, and that seems to be helping with the sensory overload, but it also makes it harder for me to sleep.

My GP started me on mega doses of Vitamin D to get my levels back in the normal range. I think that might have helped a tiny bit.

The most helpful things have been the weekly saline infusions, CoQ10, and lots of rest. I still have a long way to go to get back to my previous baseline, but I am hopeful that I might see some more improvements. If not, I will get used to my new normal and keep enjoying the life I have been given, challenges and all.

We still aren't sure what caused the crash. I think it is probably several things:

- the long, hot summer and going in and out of the heat too much.

- pushing my body too hard for too long.

- Vitamin D that was on the low side to begin with.

- difficulty sleeping.

- gastroparesis not allowing me to take in enough fluids and salt daily.

- the normal ups and downs of dysautonomia.

- and very likely a mitochondrial disease that is getting worse over time.

That was a very long answer! I hope it isn't too much to read!

Thank you to everyone who has been thinking of me and supporting me during this difficult symptom flare.

Rachel

[janiedelite]

Rachel, thank you for letting us know how you are doing. I hope you continue to see improvement. What a long road this has been for you!

[Sarah4444]

Rachel, I really hope you continue to improve. It's so scary not to know what can cause a flare up like that. When I read your most recent post I was amazed at how many things I was feeling this Aug-Sep that were very similar. My palms didn't peel, but they are itchy and burn sometimes. I also had to stop Florinef because my eyeballs felt they were going to explode - what is strange though, is that I have a friend who is an optometrist, and a couple of days after I stopped taking it he measured my eye pressure and it was below normal, even though it still felt high.

If you have the energy, please let us know what you find as you continue to see doctors, and what helps (or doesn't). I have learned everything about this by reading posts and articles, and need to keep learning. Take care.

[runningshoe]

Rachel -

Have you ever been tested for Lyme or other coinfections?

Hope today is a good day.

lina

[Rachel]

Hi Lina,

I was tested for lyme a few years ago, but the results were negative. From what I know of lyme disease the onset, symptoms, and progression don't seem to fit with mine. But thanks for the suggestion!

Rachel