Jump to content

New Here And In Despret Need Of Some Help


Recommended Posts

Hey everyone,

My name is Dustin. I am 45 years old and the father of two kids 9 and 10 years old. I first developed POTS about 6 months ago and it has been so severe that I had to leave my job of 23 years and go on disability.

As time has passed, I have developed some really strange symptoms that my Neuro doc. is calling Dysautonomia, however when I google them I can't find them as symptoms of Dysautonomia.

First let me tell you that I have been put on Klonopin and Xanax as my anxiety flares out of nowhere. Even with these meds on board, my anxiety doesn't always settle down and I will be yawning.

I'm on Beta blockers, but they don't seem to do much for the POTS. I try and walk daily and I bought one of those pulse watches. My blood pressure doesn't drop when I stand up, and when I walk, my heart rate comes down from like 140 to sometimes 100 or so. But as soon as I stop walking and just stand, up the heart rate goes.

Lately, I've been getting tremors in my arms, especially when I bring food to my mouth, but I now am getting them in my head. I don't think these are parkinson like as they are so uncomfortable. I get this strange feeling in my head and then it starts to noticeably shake. This happens now when I'm sitting, standing, and even in my sleep, it wake me up.

My latest symptom is uncontrollable crying, which I can feel in the front of my head when it comes on and I find myself crying at the drop of a hat. If someone says cry, then I ball. It's actually hard not to cry. This is not appropriate crying and I know this. It's like total despair crying and I dont' understand it. I'm being told that I am depressed and I am, but not to the extent of the crying I am doing.

Has anyone ever heard of this kind of stuff ? I am going to a psychiatrist tomorrow, but I think the Neurologist is seriously missing something here. My MRI is clean and I have had numerous CT scans of the head for head pressure and pain that does not respond to any pain medications I have yet to find.

This is turning my life upside down and ruining my family life. The crying is ruining these things and not the other symptoms even though they are not fun either.

Glad to have found this board.

Dustin

Link to post
Share on other sites
Hey everyone,

My name is Dustin. I am 45 years old and the father of two kids 9 and 10 years old. I first developed POTS about 6 months ago and it has been so severe that I had to leave my job of 23 years and go on disability.

As time has passed, I have developed some really strange symptoms that my Neuro doc. is calling Dysautonomia, however when I google them I can't find them as symptoms of Dysautonomia.

First let me tell you that I have been put on Klonopin and Xanax as my anxiety flares out of nowhere. Even with these meds on board, my anxiety doesn't always settle down and I will be yawning.

I'm on Beta blockers, but they don't seem to do much for the POTS. I try and walk daily and I bought one of those pulse watches. My blood pressure doesn't drop when I stand up, and when I walk, my heart rate comes down from like 140 to sometimes 100 or so. But as soon as I stop walking and just stand, up the heart rate goes.

Lately, I've been getting tremors in my arms, especially when I bring food to my mouth, but I now am getting them in my head. I don't think these are parkinson like as they are so uncomfortable. I get this strange feeling in my head and then it starts to noticeably shake. This happens now when I'm sitting, standing, and even in my sleep, it wake me up.

My latest symptom is uncontrollable crying, which I can feel in the front of my head when it comes on and I find myself crying at the drop of a hat. If someone says cry, then I ball. It's actually hard not to cry. This is not appropriate crying and I know this. It's like total despair crying and I dont' understand it. I'm being told that I am depressed and I am, but not to the extent of the crying I am doing.

Has anyone ever heard of this kind of stuff ? I am going to a psychiatrist tomorrow, but I think the Neurologist is seriously missing something here. My MRI is clean and I have had numerous CT scans of the head for head pressure and pain that does not respond to any pain medications I have yet to find.

This is turning my life upside down and ruining my family life. The crying is ruining these things and not the other symptoms even though they are not fun either.

Glad to have found this board.

Dustin

Hi Dustin, I am new to this forum too. I was diagnosed with NCS late June of this year. Before I was correctly diagnosed, I had been diagnosed with a seizure disorder and put on Keppra. During this time, I experienced severe tremors, strange sensations in my head and body, and uncontrollable crying. The crying was so severe and it would happen at different times during the day. Before the crying started there was always a strange sensation in my head. As soon as they realized I didn't have a seizure disorder and they took me off the Keppra, the symptoms slowly stopped. I still get internal tremors, but no more tears. I would check the side effects from your medications. I hope things get better, Pat

Link to post
Share on other sites

I have/had the tremors in both arms/hands, feet, head and tongue :blink: as dxed by a Parkinson's neurologist (I don't have PD.) The only time I have had uncontrollable crying was when my thyroid was off. Commercials, movies, magazines...you name it! It was awful. Welcome to our extended orthostatic family, may you find more support and information than you ever need!

Link to post
Share on other sites

I had tremors last year when my blood sugar was off -- google reactive hypoglycimia and see if it might sound like what you are going through.

Some folks do really well on benzos and it helps their POTS as well as ancillary anxiety. I unfortunately did horribly on xanax (as well as ativan and vallium) ... more rebound shakes, panic and tremors ... and it probably took a good six months after I had slowly tapered off to rebalance again. Though at the same time I was battling the hypoglycimia and episodic thyroid toxicity from flares of Hashimoto. So who ever really knows.

Welcome to the boards, I hope you find some useful information that helps with your unique healing journey.

~EM

Link to post
Share on other sites

The crying and anxiety is most likely due to the chemical changes in your body as it tries to handle your pots. Do a search on anxiety on the message board and you will find a lot of us suffer from it also there are some pretty good explanations on how the body's increased use of adrenalin and norepinephrine messes with our emotions. You are also going through a stressful time in your life with going on disability and having a new disease. I suspect that walking gets your blood circulating to such an extent that it actually takes care of your pots. Do you have pooling when standing? Ask your doctor if you could try midrodine (proamatine) which helps constrict the veins and improve your circulation which might reduce your heart rate. I get the shaking also at time it may be from the muscles getting poor blood flow at the time or some of the other causes mentioned previously.

Link to post
Share on other sites

Welcome Dadof 2,

I have a different viewpoint on this. I think your body is trying to help you heal!

Be patient with me while I try to explain...

I felt like part of my brain suffered loss from dysautonomia and I I forced myself to use other parts of my body to "wake up" and "regenerate" dormant brain function.

I use my non dominant side to write, I listen to different kinds of music, I do puzzles...

Recently, my prayerful/meditation became very intense in a deeply healing and spiritual way. While listening to music by Robert Haig Coxon, the CD is "Prelude to Infinity" I would just sit and weep. It lasted for the first few times I listened to it and I let myself "just go with it" and allow the tears to stream. I felt as though I was working through some lost memory, the deeply buried sadness for the loss of the physical function I would never have...and healing through it through the music. After these initial days of tears came many days, continuing to today, that offer me the new insight to all that my future can be with the right attitude and perseverance.

Rather than trying to analyze your reactions right away, just sit with them for awhile. Sometimes we need to give our body time to work things out.

Through your tears of sorrow and joy, you will always have one of us sitting beside you in support and love.

Welcome,

tearose

Link to post
Share on other sites

Welcome to your new world of pots! You're in the right place to get help. After I recieved my dx of pots I had the same thing with crying. I must have cried buckets full for at least six months. Finally I think by body began to adjust to all that was happening and the crying stopped. I have pots now for almost 4 years and I still cry more then I used to before I had pots. While I was having my ttt done I was sobbing uncontrolable. I looked at the teck and asked what is this, I'm not afraid, I'm not hurting, why am I crying? She informed me that it was just a side effect and not to let it bother me. So now I take a box of kleenex with me and just have a good cry once in a while. Is it embarrasing, yes but I've learned not to care what others think, I'm just trying to get through the day. Take care of yourself and I hope things improve.

Maggie

Link to post
Share on other sites

I hate to break the trend, but I've cried less since becoming ill. In fact, I might cry 2-3 times a year. I'm sure I could use more as an outlet, I just don't do it. Weird, huh? Also, I know you're on some anti-depressants, so are you seeing a counselor? I know it really helped me deal with the onset of this disease, just in helping me cope and accepting some of my life style changes. It can be a very hard transition, and sometimes we all need a little help.

Anyway, welcome to our forum. You'll find a lot of support and caring people here. Young and old, with kids and without, we run the gamut.

Cheers,

Jana

Link to post
Share on other sites

Hello Dustin,

Welcome to the forum, I'm relatively new here too and have found it to be a fabulous support. Are you the same Dustin (with EDS) who just befriended me on facebook? (My real name is Katy, and I am from the UK.)

I don't have the crying as regularly as you, but I have an unattributable feeling of despair, which, in its more extreme attacks, will make me cry uncontrollably. I am convinced this is down to Dysautonomia because 1. I only get it when I'm standing up and 2. It can come and go very quickly (like every other autonomic symptom does!). There is no fading in or fading out, it just starts and stops suddenly.

I don't get tremors anywhere other than my legs, but you'll see on here that there are lots of people who do.

I hope you manage to not feel alone with your symptoms - I think we have all been there.

Janey

Link to post
Share on other sites

Welcome! I'm sure you will find this forum a great place to learn and find comfort. I'm sorry for your severe symptoms and loss of functionality. It is quite a loss to you and your family I am sure. Let us hope that you are one of the folks who is able to make a solid recovery. It can happen for some.

The way you describe the crying feeling onset does sound like either an aura (to seizure or migraine) or a simple-partial seizure itself. Different types of seizures can be quite invisible and also not respond to some anti-seizure meds but respond to others... or none at all. The autonomic problems, dehydration/hypovolemia itself, several meds, hypoglycemia (or extra sensitivity to such), hypoperfusions (blood flow variations especially to the brain), and it seems a great many other things can lower seizure threshold. I guess these things can also just happen from weird blood flow in the brain as we are prone to... rather than requiring full on seizure activity. Seizures can escape detection too, especially the localized partial kind like TLE.

Emotional "lability" can come from many things and from peoples reports it seems autonomic dysfunction is indeed one of them... it is also reported to be common in post trauma processing and symptoms. Even if that is not the source in your case, it will likely be worth addressing the traumatic impact the illness has had on your life in some manner that you and your family see fit. There is a lot to absorb, it can take time and effort especially on top of physiological problems, and one problem can feed into another... it is almost never as simple as finding a clear cut cause & cure with this stuff.

It also seems almost universal for those with autonomic problems to fall anywhere from "told you are depressed but not feeling so at all" to "having significant depression but knowing that is far from the whole story"... same with anxiety. I've gone through years of frequent crying and also dry years (I think my record is 5 years never crying or feeling much at all)... hard to say for sure exactly what's going on and you kind of get to take your pick as to medical approaches since many of us fit multiple medical "templates". I've also had what periods of seizure/pseudoseizure (hard to say which it is) that is associated with sudden intense emotion (pain or sadness) that hits in waves and kind of subsides in a calm afterward... may or may not have been tied with my POTS stuff. I have heard of people having sudden lability specifically upon standing... and one kind of assumes it is related to blood flow abnormalitites, like a syncope problem except one isn't passing out, instead perhaps the limbic system or similar is getting under nourished and going unstable. I tend to take the philosophy that it matters less what the ultimate cause is and matters more what approaches & treatments end up helping you. That can just take time to work out, I suppose.

I am not too up on the head pressure and pain issues, but I think for some *very* rare cases it can relate back to cerebro-spinal fluid pressures (high or low). Its good that an MRI has come up clean for you. Glad it is not a tumor... those could tie in with undue pressure/pain and emotional lability. I cared for a relative in that situation and even though the problem wasn't epilepsy itself... dilantin was prescribed.

I really hope your family is hanging in there with you. It is horrible to have extra complications from inter-family problems tied in. Please feel free to let us know how things go as you see fit.

Link to post
Share on other sites

Hi Dustin,

I just actually posted my wife Kristen's story. She has some of the same problems that you seem to be suffering from. She does not have the uncontrollable crying, but she has had tremmors / shaking which sound like your head movements and they also happen while she is awake, asleep, or out due to an "episode". She was on beta blockers for POTS as well and they did not work for her either. She seems to have more actual "episodes" in terms of actually becoming unconscious than you do, but a lot of the symptoms seem similar. Unfortunately, I don't think I can give you much in the way of answers since Kristen is currently in the hospital for the third time this summer and the doctors can't seem to figure her out. If they do give us any useful info, I'll be sure to pass it on.

Hang in there

Link to post
Share on other sites

Hi Dustin.

I am trying to figure out how this site works. I am 52 the mother of a 20 year old and was diagnosed with POTS 6 years ago. At that time I was diagnosed with EDS-III. 2 years later Panyopituitarism. I am sorry that you are struggling. The autonomic nervous is responsible for so many different functions. As one physician said to me, POTS is a syndrome. I have also had neurological symptoms and my emotions are unpredictable. I found this site awhile ago, but didn't have the energy to participate. I think this is a great place. People with POTS understand the struggles with the medical profession and the ever changing symptoms of this illness. I would encourage you to explore counseling to help you and your family better understand what you are experiencing. Don't be afraid to talk to your drs. about the symptoms and if they don't understand, try another dr. For me one of the hardest things to get used to was not having control of my body anymore and every day is different. Be easy on yourself. Pots Place is a wonderful website to find information. Each day you need to listen to your body and try not to have to high of expectations. Good luck and hang in there!

Link to post
Share on other sites

Hey Dustin.

Sorry you are experiencing what you are.

I had much of what described several years back when my autonomic symptoms were at their worse.

In my case it was a combo of dysautonomia and probably simple partial seizures (sudden emotional changes) as well as med side effects.

Here is a link to a good simple description of the simple partial seizure:

http://www.epilepsy.com/EPILEPSY/seizure_simplepartial

You can see that beside unusual motor movement, the simple partial can cause sudden emotional changes as well as autonomic changes.

Incidentally, a book I have on autonomic disorders by the AAN, states that it can be very difficult to differentiate between a simple partial seizure and abnormal auotnomic activation w/o seizure.

Anyway, the motor issues (tremors/shakiness etc) for me were not seizures, but more so I think med side effects.

Some meds that can cause these types of side effects are dopa antagonistic antihistamines & antiemetics (meds used for nausea and vomiting).

SO meds like benedryl, compazine, phenergan, reglan etc.

Reglan for me was the worst! Not only did it cause movement problems, but also caused extreme restlessness and anxiety.

Benzodiazepines (xanax & valium etc) even though a different type of med can also cause some similar symptoms in some.

Also, benzo withdrawl can trigger seizures. Some become very sensitive to coming down from benzos

Anyway, I hope you figure it out soon & and find some relief.

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...