Is There Anyone Who Could Answer My Question?

[tumble-down]

Hi all. I’m a bit nervous about posting this but I’m hoping someone can give me an answer!

I was diagnosed with PTSD ten years ago - after 42 years in an abusive marriage. I have all the common symptoms: - nightmares, triggers, flashbacks, agoraphobia, hypervigilance, anxiety and panic attacks, etc., etc. However, I also have ‘jelly-legs’ attacks…well that’s what I call them!

I can be OK one minute and then know nothing until I ‘wake’ up on the floor or ground (if outside when they happen). My neighbours have witnessed a few of these ‘events’ and they tell me that it looks like my legs just give way underneath me (jelly-legs) and then my arms thrust about and my legs jerk around. My head moves from side to side and I moan quite a bit with a few groaned “No’s” mixed in during this time, which usually lasts for around twenty minutes. I ‘wake’ with the most excruciating ‘burning’ pain running up and down the back of my head and no feeling in my legs. After a while the sensation comes back into my legs, first as ‘pins and needles’ and then soon after this like short, sharp electric shocks. I sometimes get muscle spasms in my legs also - and my toes turn upwards on these occasion.

For the last seven months I have been getting help from a local ‘Mental Health’ team and I really appreciate all the effort that they are putting in to helping me cope with my PTSD symptoms. However, last week my Psychologist (who is at present teaching me ‘Coping Strategy’ techniques for when I am ready to try EMDR treatment, passed a comment which encouraged me to believe that - People with PTSD don’t have ‘Jelly-legs’ attacks.

This is really ‘getting’ to me. It’s been jumping around in my head most of the time during the last few days. I’ve always had ‘Jelly-legs’ attacks – usually about three a week, ever since my PTSD was first diagnosed. I don’t know which is worse, the repeating nightmares that make me not want to sleep because they terrify me so much or the ‘Jelly-legs’ that are so painful and leave me exhausted, not to mention the ‘damage’ I usually find afterwards e.g. bruises, scratches, cuts, etc.

Does anyone else on this forum with PTSD have ‘Jelly-legs’, or is it possible that I was wrongly diagnosed with PTSD ten years ago?!

 

[Born to Run]

Could it be a separate medical condition unrelated to ptsd? Did you have a neurological exam, MRI or other check ups to rule this out. Or do you know inside it is part of the ptsd? Is there something that triggers it or just random? It could be an extreme flight reaction as your legs are the flight body parts, but so overwhelming that it goes to the last of the four F's -fight, flight, freeze, faint- straight away: faint is what I am thinking of. My legs have collapsed in therapy too, and it was past the freeze phase and my legs -and me- just gave up and I collapsed, while walking around in therapist's office. I remained conscious though. My therapy is somatic experiencing and from this perspective it does make sense to me. Especially when you say the word 'no' it could be that in the past you could not run from threatening situations, while you wanted to, and your body was prepared to do that, but suppressed it. If this happened for 42 years in your marriage, maybe every day, you can imagine how pent up this impulse in your legs has become. It is like a pressure cooker, and you keep the lid on for 42 years.
However, I would make very sure you have no medical condition causing this. No, I do not believe at all that you were wrongly diagnosed if I read your post. Just not every therapist is a body knowledgeable therapist. If you have such strong physical reactions, somatic experiencing could be very beneficial for you.

 

[Friday]

If you've ruled out medical conditions....

Hyperventilating causes a buildup of Co2. Co2 balance is what tells us to breathe. Too much Co2? You stop breathing. Not because you can't breath, it just removes the impulse to. Swimmers (very dangerous) trick. Cause you will either pass out, muscles will quit working, or gasp water of you don't break the surface soon enough.

Also happens to a lot of people in panic attacks. They breathe too fast & too shallow. Co2 gets f*cked up. Not enough o2 to the brain and your muscles collapse, or you faint, or you suddenly suck a huge gulp of air and your head spins/ ears ring/ balance goes sideways as your body tries to regulate what to what. (What needs o2 the most).

So much of life comes back to breathing.

 

[Seasounds]

The mindbody is connected. As one symptom can "originate' in one mindbody system, it is very important to address significant changes-which you are experiencing, My suggestion is meant to be helpful, not alarming. Please take it with a grain of salt, as I am not able to communicate my concern for you, in any other fashion, at the moment. (My own alarm system is activated.)

I urge you, to see a neurologist; who is a provider who will not overlook your strong neurological symptoms. Time is of the essence to rule neurological factors out, to prevent further degeneration, or accidents/falls, that could further injury you.

In respect of their humanness, I have experienced psychologists, therapists, primary care doctors, chiropractors, physical therapists, to over-look the possible gravity of two situations, because it is hard for them to relate to themselves-their denial, and/or because diagnosing will cause more paperwork for them-and they can choose to not take on cases (however it is unethical to not refer).

Additionally, I worked for a chiropractor in college, who dismissed a new patient, because their involved neurological concerns, and he didn't want to be involved, and he knew he wasn't the one to help her. Yet, to avoid sharing bad news, he just said, "I can't help you." On one hand, this chiropractor did the patient a favor; to not adjust her was a gift.

This denial problem has occurred to me with PTSD (no one wanted to name it, or believed that my childhood was as dark as it was. And with a recent disc problem, once again, no one wanted to be responsible for diagnosing it-which would mean more paper work for them. When I finally led the way, to break the professional denial systems, by frankly calling my symptoms for what they pointed to, then the providers did their work, and confirmed my suspicions.

Take the courage, and ask for a neurological consult, without the backing of your other providers. If you still have symptoms, and no one gives you concrete answers, ask for a 2nd neurologist's opinion. There are neurologists with a psychological specialty; as most may be academic, they can be consulted, at the very least. Push your providers to keep asking questions of your condition, investigating, and testing. Has anyone ordered an MRI? Has anyone done a full neurological exam?

There also can be multiple layers of mindbody physiology going on. For example, some of your symptoms might be attributed to PTSD memory processing/release, and simultaneously some of your symptoms could be due to neurological involvement of involving spinal nerves (pinched), brain abnormalities (motor and sensory aspects), and the ability to carry nerve innervation from your brain, through your spine, to the muscles in your leg (the myelin sheath),

Good luck. I really like your post, as it speaks to the multifaceted layer of the mindbody involvement with PTSD. You are smart and brave, to ask questions, and look for help. Good luck!

 

[Neverthesame]

I am not a doctor by any stretch of the imagination. I will try to help brainstorm though.

I would like to ask you a few questions if you don't mind?
-Have you started, changed or stopped a medication around the time this began?
-Have you been tested for epilepsy?
-Have you suffered a head trauma?
-Did you notice whether you are breathing really hard or rapidly prior to a "jelly-legs" attack (hyperventilation)? As @FridayJones had asked. (I suppose this question was a little redundant.)
-Do you have any warning that an attack is coming. Or is it totally out of the blue?

You don't have to answer any of my questions, more so I am asking to give you some ideas.

I would however suggest you book an appointment with your GP. Not the mental health team, but your family physician. As this could be an unrelated health issue, one which is clearly affecting your quality of life.

 

[tumble-down]

Thanks to you all for taking the time to reply. I had prepared a reply to 'Born to Run' but I think I could say it answers you all:-

Thank you for replying to my post so quickly. I really do find it hard to believe that it is an unrelated medical condition. I’m not much good with medical terms but in the past ten years I have had ‘things’ stuck to my head and attached to monitors once and on two or three occasions I have been laid on a ‘table’ and put into a long tube – I think this might have been an MRI scan, the last time was about six months ago. Each time I have been sent home with an ‘All Clear’ for whatever it was that they were looking for. I get no warning at all, it just happens and I have no recollection of the time I’m not here so to speak. I know I have had a ‘jelly-legs’ only by the pain in my head and feelings in my body (mainly legs).I don’t know what somatic therapy is but I will do a search and try to absorb the information – I have difficulty in concentrating! It is a relief for me to know that you too have had what I call ‘jelly-legs’ (not that I would wish them onto you or anyone!) – So there must be others out there who get them with PTSD?! Your explanation is so correct (heart pounding when I first read it!) I couldn’t run, he was trained in restraint. He had complete control over me. Your explanation is also very clear; I can understand what you are saying and it has helped. Thank you so much for taking the time to reply I’m ever so grateful.

PS. Over the last 6+ months my Doctor has been constantly kept informed by the psychiatrist, psychiactric nurse, psychologist and social worker who all visit me here at home. I am told that they are working together to help me. It was the comment of my psychologist that started me 'thinking' or rather doubting that I had PTSD because I get frequent 'jelly-legs' attacks. I stopped all medications (SSRIs) about a year ago (not intentionally - they stopped working and all of my symptoms became worse and I felt suicidal - hence Mental Health team involvement) apart from the Diazepam (which I am now addicted to!) and the Co-Dydramol which are the only tablets that relieve the pain in my head after the 'jelly-legs'. I think I should add that I will be 70 yrs old this year which probably doesn't help! I had an abusive childhood - sexually assaulted by a gang of men, raped by my parents friend when 15yrs old. Pregnant and married to a very abusive man at 16. Had two children by the time I was 19 yrs old and I foolishly believed my father when he told me that boys needed a father or they would gow up into 'Pansies' - when I asked if he would help me to leave my then husband. I had blocked a lot of my past out and I guess there is still more to remember.

Once again I would like to say thank you to you all for taking the time to help and reasure me. My kindest regards to you all

 

[moonbeam]

It sounds like it might be somatic or like a dissociative state but I am not qualified to make that kind of decision. I would advise coming right out and telling your T about it and see what they say.

 

[seedling]

At 70, you are an amazing survivor. It's great you have such a dedicated team to help you.

All the best.

 

[Born to Run]

I am so very glad I could offer you something helpful. If the long tube you were put in made a freaking lot of noise it was lost likely an MRI scanner. I think the things stuck to your head were electrodes to monitor your ECG. You have had a very hard life, I hope things will get better for you. I believe it is never too late for that. This is the website of the founder of somatic experiencing: http://www.traumahealing.org
Yes, I find it amazing too how comforting it can be to have the knowledge that someone else has had the same experience, and you are not alone and not crazy. Are you seeing a trauma therapist? It can be a major difference to see a trauma trained therapist or a psychologist. As you have a severe somatic reaction, the "jelly-legs", and a very long trauma history, you need a pro. I have heard of people with multiple trauma not reacting very well to EMDR. My own therapist does not use it anymore for the multiple trauma patients he treats. Please ask your therapist what her experiences are, before going down that road. Please feel always free to contact me via a PM. Take care so much.

 

[Neverthesame]

I am definitely glad you have alot of support. I am also quite sure that you are of a tougher sort than I.

I hope you find an answer. If for nothing else but to put your mind at ease. Take care.

 

[Seasounds]

thanks for responding. :) My intuition, as well, has been a great resource, to add to the mix of information from psychology and medicine.

 

[tumble-down]

I'm so pleased I got up the nerve to post. I have a hard time communicating but I was feeling so desperate yesterday I *had* to hear from 'the horses mouth' so to speak...someone who really knows what PTSD is like - hence this forum! Thank you all for your time and comments. My Psychologist is coming on Monday and I'm hoping I will have the courage to speak up for myself about the EMDR sessions that I am being prepared for with 'grounding' techniques. A friend (since school days who knows almost everything about my life) wasn't too happy to hear about this sort of therapy and has tried to warn me against it because there are so many 'trauma' incidents involved. I feel a little more confident this morning and I will be going to the link above (thank you Born to Run) to see what I can make of any information there. Thank you so much. Take care. Kindest regards to all you lovely people.