Burning pain in head - can't even cry

[hootswithowls]

Thanks so much for all your support, everyone.

Well, my MRI was negative. I guess that it's unlikely to be MS given that my last negative MRI was in 2006. I was thinking it was earlier as I thought I had not had symptoms since 2004 or so, but guess it was 2006. It seems very unlikely that it could be MS 13 years after the last negative MRI, and I definitely first started having strange symptoms since I was 1998, mild initially. Actually everything between 1998 and 2006 was mild compared to now, and again, I had no symptoms between 2006 and now.

I'm extremely scared this time, though, because of this leg weakness and shortness of breath, which I never had years ago. And, I also have twitching here and there all over my body. The breathing thing comes on out of nowhere, is bad for a few minutes and then seems to lessen for a while. I've also had a feeling of my mouth and tongue being numb/large, which also comes on and usually goes away after a while (that symptom is happening right now).

I went to the ER yesterday because of this breathing problem....I kept trying to breathe as it felt like I wasn't getting enough air, and I ended up hyperventilating - I thought I was dying, having never hyperventilated before. Ended up calling 911. My BP went up to 200/100, and my heart rate went to 129. They gave me Atavan, and I came out of it. I insisted that they let me see a neurologist. They sent one down who basically told me I was an anxiety case. Anxiety made it worse, but something else is the root cause, and I'm really terrified. It's not normal to feel so weak that you cannot keep standing up and to have this come out of nowhere at the end of April and just worsen and worsen.

I know that because I had a milder flavor of this before, it would be hard to say that this part b version could be ALS as I know it's unusual for ALS to remit at all, and those neuro issues I had 14+ years ago were largely sensory. This actually started sensory (tingling,burning,numbness), too, and I still have some sensory symptoms, but right now, not really. It's weakness, twitching, and the breathing constraint that's not really at the chest level but more at the sinus level - yet sinuses are totally clear.

At this point, chasing a diagnosis is futile. I want help with the breathing - it's the worst of it. I actually cannot sleep at night - not at all because when I finally doze off, I awaken with a start to this breathing discomfort. They gave me Xanax at the ER, and I used it last night to sleep - first time I slept more than 2 hours a night in days. Yet, I'm also afraid of it since I'm worried it is restricting my breathing at night, and I'll be too out of it to realize and wake up. I'd like to know what's going on when I sleep - if I hesitate breathing or what. I know anxiety over the breathing issue makes the breathing issue worse, but I can't help it....

[Virginia]

Hootswithowls, sorry everything is so hard for you right now. Did they do both MRI of the brain and Spinal Cord? Also, you could get to the bottom of the breathing problem, I think, with a sleep study. My brother did one and he said there is nothing to them. They were able to tell him a lot of information regarding what was going on with him at night. They would know exactly what you are doing when the problem starts and what happens during the problem. He saw a Neurologist to have his sleep study done. I hope you will talk to your Neuro about getting this done.

Please continue to keep us informed, and continue to let us know how you are feeling.

[Sunshine]

Start where you are.
Right now, start with the breathing. Get the anxiety piece under control. Here is a meditation I want you to try by Tara Brach. It is a 4 min meditation. Get something you can sit on comfortably in a quiet room away from hub bub. Dont worry about doing it right or wrong, Just follow her lead. If you like it, I will send you an 11 min one. These meditations calm me down and bring be back to the here and now, out of the depressing past of loss, and the scary future of what if...

Her voice is amazingly soothing. If you like it, go to her webiste at TaraBrach.com. It is free, ou dont have to make a donation. Some are for sale. Many are free. She is an amazing instructor. It will help you regardless of the nature of the physical causes of your problems.

practice this meditation 3 times a day. More if you want. When you find your mind wandering (as all minds do), notice it by saying to self, “I am thinking” and then float away from the thoughts and back to the meditation.

Only registered and activated users can see links., Click Here To Register...

You will calm down the part of your brain that is emotionally aroused 24/7 which can only worsen your symptoms. Trust me on that.

In the meantime, keep a log of your symptoms,,,get a second opinion if you do not think your docs are up to the case. Stay here , we will help you navigate and ground you. We have all been through something like this...I know I have and am.

PS re your worry about breathing, go see a pulmonologist . One with a heart, not just a brain.

[agate]

HWO, I hope that you've gone over any medicines you're taking (including OTC meds) and investigated whether any of them cause breathing problems. Many drugs do have effects on breathing.

You might want to check your environment. If you're in the same situation most of the time, that shouldn't be too hard. Could there be something in the air you're breathing that is harmful? Even something like a humidifier that isn't cleaned regularly can cause problems. A neighbor of mine had to have special HEPA filters in her apartment for quite a while because mold was discovered there.

By now you're probably calling me a dimwit and wanting to scream that you tried all of these measures long ago.

But I thought it wouldn't hurt to bring them into the discussion...

[Virginia]

I think everyone would be surprised to know what the new sleep studies are showing about breathing and what happens in the body during the night. I was kind of amazed when my brother got his results. Somehow, I had gotten the impression that HWO's breathing problems are a lot at night. My brother just walked in, took the clothes he normally sleeps in, a tooth brush and any medicine he normally takes, went to bed at usual time, got up at usual time and walked out. Got the results at next Neuro appt. He said the room was really nice and set up just like a nice bedroom, with separate bathroom. Furniture was nice. I think it was a Pulmonologist who sent him for this, but was done in a room the Neurologist office has set up for this.

[agate]

I agree that a sleep study would be a good idea.

My son has had some sleep studies as he has sleep apnea and uses a CPAP machine. I understand that they try hard to make you comfortable during the study--and they should since they do want you to sleep.

[Cherie]

Your description of the breathing problem with sleep certainly sounds like sleep apnea which can also cause high BP, elevated heart rate, fatigue and severe anxiety. It is possible with something like a CPAP machine you could get relief of all of this if that is the source of the problem. I hope you get answers soon. My husband has been using a CPAP for several years now and has so much more energy but it took him a while to get used to using the machine.

[hootswithowls]

Thanks, all. Unfortunately, the breathing issue isn't just at night, and I have not been able to correlate it to anxiety. The breathing issue is pretty much constant. It's happening right now but fortunately not as intense as it has been. Last night, I took Xanax, slept from 12 to 2. At 2:30, was able to sleep again until 4. Woke up feeling like I could not breathe. Seems to kick off a tendency to hyperventilate. But this intense feeling of not being able to breathe along with leg weakness and my tongue feeling large went on for several hours and then finally seemed to get a bit better. When I woke up at 4, I remember a lot of twitching, but that seems to have mostly subsided.

I have something extremely weird. I am quite certain that what I had years ago is what this is now although much more intense and frightening, and it started out sensory like years before but seems less sensory for the last few days.

It's not sleep apnea since I was sleeping 8 hours, never waking up through the night prior to this neurological attack, which seems to be intensifying. I am really scared, and I'm sure all of you know how this looks to a doctor - they see nothing, so I'm tossed in the crazy bag, just like years ago. That was all tolerable then since it was sensory and some dizziness in attacks that came, stayed weeks, and went, but not being able to breathe and sleep and feeling like my legs will not keep me upright are a whole other level. The breathing is the worst. It puts me in a constant state of discomfort - ranging from moderate to extreme. When I breathe in deeply, I can do it, and my lungs are clear....but something is impacting how I'm breathing.

[Virginia]

HWO, so sorry. Yes I know what it is to be labeled a crazy.

What I did was went to yet another new
Neuro, set down at his desk, looked him straight in the eye and said Please help me. I then told him I had heard he would bulldog something, that he was the most thorough Neuro. Then I told him my life was being completely interrupted and I needed help. I told him I was willing to undergo any test or do anything he wanted in order for him to get to the bottom of what was wrong with me.

At that time I was older than you said you are. But he listened and it took both of us where we never expected to go. He did not expect to find ms nor did I.

Just the end of my journey to get an answer, not the many years it took to get there. I just hope you soon find that one special Doctor who’s curiosity you peak.

Stay with us we are good supporters, and maybe someone will come up with something, because you can’t give up.

Good luck!

[agate]

Thanks, all. Unfortunately, the breathing issue isn't just at night, and I have not been able to correlate it to anxiety. The breathing issue is pretty much constant. It's happening right now but fortunately not as intense as it has been. Last night, I took Xanax, slept from 12 to 2. At 2:30, was able to sleep again until 4. Woke up feeling like I could not breathe. Seems to kick off a tendency to hyperventilate. But this intense feeling of not being able to breathe along with leg weakness and my tongue feeling large went on for several hours and then finally seemed to get a bit better. When I woke up at 4, I remember a lot of twitching, but that seems to have mostly subsided.

I have something extremely weird. I am quite certain that what I had years ago is what this is now although much more intense and frightening, and it started out sensory like years before but seems less sensory for the last few days.

It's not sleep apnea since I was sleeping 8 hours, never waking up through the night prior to this neurological attack, which seems to be intensifying. I am really scared, and I'm sure all of you know how this looks to a doctor - they see nothing, so I'm tossed in the crazy bag, just like years ago. That was all tolerable then since it was sensory and some dizziness in attacks that came, stayed weeks, and went, but not being able to breathe and sleep and feeling like my legs will not keep me upright are a whole other level. The breathing is the worst. It puts me in a constant state of discomfort - ranging from moderate to extreme. When I breathe in deeply, I can do it, and my lungs are clear....but something is impacting how I'm breathing.

Have you checked out the possible side effects of Xanax? Among the less common side effects listed you find "difficult or labored breathing" as well as "hyperventilation":

Only registered and activated users can see links., Click Here To Register...

Also, when you say "it's not sleep apnea" since you slept 8 hours without waking up during the night, I wonder if you know that you can have sleep apnea without waking up at night? There are interruptions in your breathing that happen while you sleep but you might not wake up even though those interruptions in breathing are quietly causing problems for you. That's why a sleep study is needed.

Sometimes sleep apnea can be corrected without the need for a CPAP monitor. There might be a nasal obstruction that can be fixed surgically, for instance. But first the sleep apnea has to be documented, and from reading your post I'd say that you haven't been tested for it? Or am I reading it wrong?

[funnylegs4]

Thanks, all. Unfortunately, the breathing issue isn't just at night, and I have not been able to correlate it to anxiety. The breathing issue is pretty much constant. It's happening right now but fortunately not as intense as it has been. Last night, I took Xanax, slept from 12 to 2. At 2:30, was able to sleep again until 4. Woke up feeling like I could not breathe. Seems to kick off a tendency to hyperventilate. But this intense feeling of not being able to breathe along with leg weakness and my tongue feeling large went on for several hours and then finally seemed to get a bit better. When I woke up at 4, I remember a lot of twitching, but that seems to have mostly subsided.

I have something extremely weird. I am quite certain that what I had years ago is what this is now although much more intense and frightening, and it started out sensory like years before but seems less sensory for the last few days.

It's not sleep apnea since I was sleeping 8 hours, never waking up through the night prior to this neurological attack, which seems to be intensifying. I am really scared, and I'm sure all of you know how this looks to a doctor - they see nothing, so I'm tossed in the crazy bag, just like years ago. That was all tolerable then since it was sensory and some dizziness in attacks that came, stayed weeks, and went, but not being able to breathe and sleep and feeling like my legs will not keep me upright are a whole other level. The breathing is the worst. It puts me in a constant state of discomfort - ranging from moderate to extreme. When I breathe in deeply, I can do it, and my lungs are clear....but something is impacting how I'm breathing.

I’m no expert but I think one of the reasons people have to do sleep studies to confirm sleep apnea is because they wake up a lot during the night but have zero memory of doing so. So I think a sleep study would still be worth your time but the breathing problems during waking hrs needs to be addressed immediately as well. I'm so sorry for your discomfort!

[agate]

Yes, that's what happens. In fact often someone sleeping in the same room as the person notices the problem, the interruptions in that person's breathing, or it might be someone who routinely snores but there are interruptions in the snoring while the person has no awareness of it. It's dangerous because your brain is being deprived of oxygen during those interrupted breaths, and they may happen often during sleep.

[Virginia]

I am going to bump this in case HWO happens to read here sometime. I know we all would love to hear from her.

[hootswithowls]

Hi All,

Still not doing very well. Very scared. Weakness in legs and also in arms - more left arm - but nothing that can be seen clinically, maybe because I was pretty strong to start - hiking and going 3.5 miles on the treadmill.

Still have a breathing problem - varies in intensity. Worse at night when trying to sleep. Am able to sleep with Trazodone, given urgent care PCP (saw Tuesday), due to inability to sleep for literally - days - averaged 2 hours for days.

Also have a weird feeling that comes over my mouth and tongue like a swelling/fullness where it feels big, and my jaw feels weird then also....but that seems to fade and has not really been continuous in intensity.

The other weird thing is a spasm below my sternum and sometimes comes on and keeps repeating after eating. It's very annoying and uncomfortable when I lay on my back particularly. It feels like a wave of tightness above my belly button.

Also saw a 3rd Neuro on Monday (still with Kaiser Permanente HMO but in Redwood City, CA). He basically said, "Well, you've seen 2 other neuros, so I don't know what you expect from me. And I looked at your history and see you saw a neurologist years ago." My symptoms years ago, which were all sensory - numbness/burning/buzzing and dizziness, coming and going, were nothing incapacitating like what I'm having now. Those old symptoms were only uncomfortable, worrisome, and annoying. Actually, what I'm having now reminded me of that at first when it started coming on April 20th, but since then, there is infrequent sensory. Mostly, it is leg weakness and sometimes twitching which I feel everywhere (mostly legs, also left arm particularly) and have seen on occasion. The weakness is not something that is bad enough to see clinically except I do shake a bit if pressing my muscles.

I am going to pick up a machine for a sleep study this afternoon and will use it tonight to see if it figures out the breathing issue. When I am at the doctor's office, my breathing is 96%. It seems the problem is the shallow breathing when falling asleep or even at rest. Yesterday, the breathing problem seemed better, but it is worse again today. It is the issue that scares me the most, but in general, I am very frightened.

Another odd thing - my resting heart rate was 62. Now is is generally 72. I wear a Fitbit, so I can see how my resting heart rate crept up to 70 or above starting 6/9.

I have an appt. with the Kaiser ALS specialist on Tuesday.

Thanks for listening, Everyone.

HWO

[Sunshine]

Oh HWO— I can hear how scary and overwhelming this all is. I wish I had a magic idea, of what to do or ask...I am glad you will see an ALSspecialist: If they can rule that out, that goes a long, long way to allay fears about what this all means. One can learn to live with MS— ALS is much much scarier, imo....

Keep coming here for support and to let us know your progress in getting help.