Anxiety, Stress and Sleep

I am not sure if I have mentioned this before because sometimes I don’t like admitting stuff like this (even to myself) but for the last 2 years or so I have been going through a bit of an identity crisis, again… MS is continuously changing my life and every time I have a major relapse and I am left living with a “new normal”, I have to learn how to come to terms with the changes MS left me with as well how to adapt to them. Several times in my life with this disease, I have felt lost regarding my identity; who I am and what my roll in this life is. For example, I thought I was going to be a photographer. Photography was my thing. I did some work (like weddings), studied it every day, and even took a class on it. But after MS did some more damage that seemed to have stuck, I slowly lost interest and gave up that idea. All of a sudden I was not “Matt the photographer” so I did not know who I was besides “Matt the guy with MS”. So I focused on writing but with more time and more “permanent disability” it became less enjoyable especially when I was not sure what my “ultimate goal” was. It was really hard to not think “what is the point of this? What difference can I even make?”

Lately I have started to FEEL like I am figuring that out. I KNOW what I have done and what I continue to do in the MS community but I am talking about what I FEEL I am doing, what I FEEL my roll is. So in the last couple months (despite me making some good progress in life) I seem to have developed a bit of an anxiety issue. I don’t really understand why, in fact, at first? I didn’t even know what it was that I was feeling but it was getting more severe and I also had several episodes where it just got way out of control. One of the feelings I have been getting that is probably the easiest to describe is that feeling you get when you are being timed on a task and the clock that is counting down reaches “10 seconds left” and the numbers on the clock turn red and start beeping as you get closer to “0”. That panicky feeling of running out of time. I don’t have any sort of deadline to worry about and I am not being timed for anything but I just have that feeling of “I am running out of time”. That panicky “Oh my god, hurry up” feeling. That feeling is alongside many other negative feelings and is manifesting in habits that are embarrassingly visible like compulsive fingernail biting (to the point that they are so short simply touching something hurts) or just being overall fidgety.

Between the identity thing and the weird anxiety issue, life was right at the edge of “I can’t handle this on my own” despite my trying but lately I have been dealing with a lot of stress and then (in the last few weeks) I have not been sleeping, as in, maybe 1-2 hours a night even on a bunch of medication. So that was causing me even more stress which was then making all my mental/emotional issues even worse and now I have DEFINITELY crossed over to the “I can’t handle this on my own” category. Not only do I think that “I should be medicated” but I have finally accepted that I need to start seeing a therapist. That I need help. Man I hate saying that haha… I am certain that I never properly processed/handled any of the MS stuff in my life on top of my own personal issues but instead I just kind of swept them under the rug; bottled it all up and put a nice smile on, a mask.

So I am going to try to make some calls today and figure who I can see for all the various health issues I have been collecting and start asking around about a good therapist that deals with people who have a chronic disease. Maybe call my local Multiple Sclerosis Society chapter? I see my neurologist in a couple weeks and he seems to know SOMEONE who works specifically with EVERY kind of issue I have ever talked to him about so worst case I am sure he can refer me to someone. I don’t know how he keeps track of all the cards he has but yeah, everyone he has ever sent me to is great.

Now regarding sleep, that is something within my realm of “what I can handle”, well, mostly. My myoclonic reaction to sound (loud and sudden sounds would make me violently jump/jerk) had got way better for a while, I stopped taking medication for it and everything! So I could deal with it just fine but lately it has come back with a vengeance and now that I live in a room with someone above me every “thud” shocks me awake at night (while I am trying to sleep my brother is just waking up because he is about to start an overnight shift) and then because of this anxiety thing I have developed I can’t even fall asleep because I feel so paranoid, paranoid that as soon as I try to breathe out a loud sound will come out of nowhere causing me to feel like someone dropped a bowling ball on my sternum while I am also being struck by lightning. Or imagine this, imagine trying to sleep knowing that at some random time someone is going to smack you in the face. Could be in an hour or could be in a minute. I feel so tense. It makes it a little hard to sleep especially when you have been battling insomnia for years.

Medication you say? I have been taking more prescription and over-the-counter meds each night than any healthy person should ever take or any medical professional would recommend but even then I just can’t fall asleep! I would just feel terrible all night! So I had started sleeping on the couch to see if that would help but that hardly helped especially when people are coming downstairs to eat. Earplugs didn’t do it either because all they did was block out the ambient noise but the sudden loud thuds? They would still make it through. Now I had bought some noise canceling headphones online right after we moved but after they were delivered I realized that I had never updated my address on eBay! So they had shipped to the wrong address and were marked as “in mailbox” which was one of those community mailboxes that locked so I had no way to just stop by and grab it. I called the post office and they were able to go back and pick them up and then forward them but… well it has been a nightmare. Let’s just say they were marked as “re-delivered” but never came… so not only was that $100 down the drain but my main hope of getting sleep was gone too! I was planning to wear earplugs with those headphones over them on full blast so that they would drown out any noise at night while not sounding super loud to me because of the earplugs. Like how they do in an MRI machine.

But yesterday I finally decided to dip back into my savings and buy more regular earplugs and a basic $30 pair of over the ear headphones to use in combination. Not great but way better than nothing. I also had thought about those earplugs people use at the shooting range. If they could help with gun shots then they should be able to take care of sudden thuds at night right? Well they are awesome but they have a tiny piece of plastic that sticks out so I can’t fit my headphones over them and using the alone? Well, they make things so silent I would not be able to sleep because of my racing thoughts! I need white noise. But the regular earplugs with the headphones over them seemed to work ok last night. I did take Temazepam as well which I need to stop because I have definitely developed a bit of a dependence on them… I used to use cannabis oil to help me sleep but because it is mostly THC it is really not good for my anxiety as it can make people feel paranoid and though it never did for me it does seem to make my anxiety issues worse as I discovered the other night while I was tensely staring at the ceiling… So I might have to look into some other marijuana products but I am not sure when because I have spent way too much money lately! All I know is that I can’t tackle the other problems in my life if I can’t get any sleep so this has definitely taken priority over everything.

34 Responses to Anxiety, Stress and Sleep

  1. Michael Springer says:

    Excellent article Matt. Many of us are struggling with very similar issues.

  2. julie lowndes says:

    You are so aware of what is going on with you. I too have terrible sleep issues. I can not stop my racing mind😕 I don’t take anything but cannabis oil out of a dropper but that doesn’t seem to work.

    This disease is difficult and keeps changing. I now have flexor contracture in my right leg so workouts are interesting! But….as you are doing….we must stay on top of things and handle the best we can. Your honesty is so helpful and refreshing. It reminds us that we are not alone. We’re in this together!!

    • Matt Allen G says:

      I have always TRIED to be self-aware, probably because I am a control freak haha. Yeah right now I just have RSO (Rick Simpson Oil) and it is pretty hit and miss but I can’t afford to buy anything else right now…

  3. Pete says:

    Sounds horrible. No idea how to help, you seem to have tried all the obvious things.

    Regarding THC – can’t you by high CBD strains at your local dispensary (ACDC, Cannatonic, etc.). Maybe blend the high CBD with a hybrid Indica-leaning strain. I find high CBG strains also help, a lot, with anxiety. Many people in my local MS community blend between THC, CBG and CBD. And my local dispensary has a 10-to-1 THC to CBD oil that I find effective. Use of a decent table-top vaporizer helps with the economy of all this.

    Also, could you grow your own to save money?

    • Matt Allen G says:

      well I could if I had the money. I need to buy a portable vaporizer first so I can use actual strains and not just edibles. I can’t smoke where I am at. But even if I already had a portable vaporizer I just have no money to spend right now so I could not even afford to go to the dispensary right now. There are some strains that I have been looking at on leafly, CBD dominant. I also pay attention to the other cannabinoids like CBN because one little tweak in a strain seems to make a huge difference.

      • Pete says:

        A desktop vaporizer may be less expensivesand more efficient. If your hands aren’t too clumsy to drop glass stems I’d recommend something like the Epicvape Enano.

        • Matt Allen G says:

          well, a portable vaporizer is in between vape pens and desktop vaporizers (in what they are and cost)

          • Pete says:

            A good portable will run about $200 or more. The cheapest is a MFLB at about $120, but it’s not powerful enough for some people. A desktop like the Enano, which costs about $180 ( they have periodic sales at somewhat lower cost) is so much more efficient than the portables that it will very quickly pay for itself. But if you need to vaporizer on the go, a good portable like the PAX is the way to go.

    • Matt Allen G says:

      and I don’t have the space to grow, if I did I could and would

  4. Elisa says:

    All I can say is that if you don’t sleep at all you can’t even have a so call good day.
    Try anything that helps you, anything at all or you are not you if you can’t sleep.
    Read about all side effects of not sleeping
    This is me Elisa, back writing to you.
    Good luck Matt, try to sleep.

  5. Michael Springer says:

    If your docs will give you a script for alprazolam 1.0mg you can break it into 1/4 size pieces and use it to get to sleep. Like everything else there are some long term adverse effects but short term use (three times a week) can help get you to sleep. It is a touchy subject but 0.25mg of alprazolam taken at 9 with 2 ounces of wine may help you to fall asleep at 10. If combining the two keep the dose of alprazolam at 0.25mg and drink no more that 2ounces of wine. Limit the frequency to 3 times a week. Less if possible. Be selective when picking TV shows in the evening. My wife watches murder mysteries before going to bed. That genre will keep me awake until 1 or 2 am.

    • Matt Allen G says:

      knowing my neuro he probably would not prescribe that plus I don’t drink anymore, alcohol doesn’t mix well with me haha – I think I can solve the sleep issue with what I got, so far the headphone and earplugs seems to really be doing the trick (knock on wood)

  6. Wil says:

    A combination of Requip, Ambiem, and Amitriptyline help me sleep through the night

  7. Rick says:

    Matt- Thanks for sharing what’s going on with you. Your sharing helps so many people. I hope this helps you too – knowing that we can relate and can learn from your experiences.

    BTW, how is your eyesight these days? I have an ophtho appointment in about a month and I am dealing with oscillopsia like you are.

    • Matt Allen G says:

      well, now we KNOW it is actual nystagmus and not oscillopsia because we can see my eyes move now. I saw a neuro-ophthalmologist the other week, she recommended I talk to my neurologist about Ampyra (surprising).

  8. Chris says:

    We share a lot of the same issues. If not all at once… over time I have dealt with/do deal with a lot of the things you have described over the years. I’m currently considering taking CBD oil as well, but one thing you should know is that, the human body doesn’t notice a difference between oil taken from a Marijuana plant or simply a Hemp plant. Cannabinoids are processed and used in the same way whether THC is present or not. If you wanted to consider continuing to try CBD oil… I would recommend a Hemp derived oil… so that no psychoactive side effects would even be possible. “Plus CBD Oil Softgels” are the brand I purchased. I haven’t tried them yet because I’m still doing some research. Many studies have shown that ingesting CBD oil can effect the way that your liver metabolizes medications. Meaning that you may have more side effects from medications, less side effects, or medications may work better or worse than intended. The problem is that not enough research has been done yet on dosages of CBD vs. medications… and how CBD can effect the liver enzymes. Either way… I wish you luck with it either way.

    • Matt Allen G says:

      I have actually used hemp derived CBD oil in the past, it was expensive and didn’t seem to do anything at the time. Maybe it would now with these issues but I can’t afford to spend that kind of money on a “maybe”. I would rather get a portable vaporizer and try different strains of marijuana based on what other people say helps them.

  9. Joey says:

    Sleep eluded me for long time. Used sound vibrations different frequencies, sleep talk down of voice, waves, and those on internet. Now many prescriptions. But MS still awakens me with mind racing.
    Anxiety…hits me hard over dumbest stuff. Medical Marijuana, I find need Highest CBD, but now highest TCH. Ever clear 151 proof to strip buds in small bottle, then let alcohol evaporate enough that it doesn’t burn when taking. Let me know if you find perfect strain, or combination of two or three. Be a chemist.

    • Chris says:

      Totally understand the “waking with mind racing” stuff. I call that the “morning crazies” (even though it rarely happens in the morning… just what I call it). It usually happens when I take my MS meds too late in the evening. I’ve found that the earlier I take my meds in the day, the less likely that is to happen when I fall asleep. It also usually happens within the first hour or two of falling asleep… which makes the experience that much more unpleasant because when I wake up my mind is still halfway dreaming and all the nerves in my body feel like they are only half firing as it is.

    • Matt Allen G says:

      yeah, I have not even explored strains that much, I don’t smoke so that makes it difficult

  10. AJ says:

    I always look forward to your posts. Always enlightening and refreshing because there are so very few who truly understand this plight. Recently started having the noise issue and the ENT has me on Klonezapam. I never sleep but lately I’ve been falling asleep in the early evening but back up by 8pm sigh..I don’t eat much,low Vitamin D and have gained 10 pds. Quite odd. I probably eat 1.5 meals a day. Sometimes i feel like I’m at my wits end.

  11. Elisa says:

    Yes if you can’t sleep you can’t go on .
    AMBIENT works well but only for a while
    It is dependent.
    Talk to neurologist only he or she knows your case .
    MS is very unique Matt as you know
    You need your Specialist he understands better than anyone. Many opinions but who but the neurologist has seen yuh since day one . Understands these ups and downs bthrough out YEARS .
    Speak to him because he knows your case better. You need to sleep. Yes every day
    Some better than others . Yes , but sleep
    I am here to help you . I understand you !!!!
    Take care Matt

  12. Karla says:

    Hey Matt,

    I have been reading through your blog and first have to thank you for putting so much time into it because it’s absolutely amazing! I can’t imagine what you have gone through and I won’t say anything along the lines of I know how you feel because I truly don’t and I secretly don’t like when people say that to me. Instead, I just want to commend you on how you have been handling your condition. You’ve taken something that can really knock a person down both mentally and physically and have addressed it head on, with a ton of strength and probably the most positive attitude I could think of.

    But this sleeping issue seriously sounds rough and it has got to be impacting your days when you’re extra tired all the time. I have a twin sister who battles with anxiety and she kind of fits in with your other post about depression as well. She was diagnosed with bipolar II years ago and her on/off cycle with her meds was similar to your story. She absolutely hates having to rely on medicine and I try to talk to her about the fact that it’s simply okay to take medicine every day and it’s not an indication of being “weak” or “reliant”. I’ve already sent her your blog link because you explain it much better than me.

    Anyway, back to sleep and what works for her…As someone already mentioned, ambient seems to help her. Her main issue is falling asleep so that whole process of winding down and actually sleeping takes extra time. She uses lavender spray all over her pillow and has got me hooked on an app called Relax Melodies which has a variety of noises/music to sleep to. Just a warning that you may become dependent on this app as well, as my roommates make so much fun of me for needing my “flute and rain” music every night 🙂

    I really hope you find something that works like magic for you because sleep is essential. I’ll be keeping up with your blog to see updates; wishing you all the best!

    • Matt Allen G says:

      Hi! Actually, since this post, I have got my sleep routine down, kind of. I do take Klonopin on certain nights but what mostly helps is 1) a before bed, winding down, routine. 2) I have noise canceling headphone and also listen to stuff like that. I listen to rain sounds and sometimes overlay that on top of some sort of PBS documentary to distract me from all my own thoughts of the day and stress.

      I hope your sister is able to find a balance of what works for her, how old is she? One of my ex-girlfriends had bi-polar so I saw just how difficult it was for her. Being on my end of that constant battle was not fun either. I imagine (based on my limited experience) that the younger someone is the more likely they are to not want to “need” the medication but what do I know?

      • Karla says:

        Hey Matt! I am glad to hear that you’re getting a sleep routine down. PBS documentaries are a great idea that I may steal from ya!

        You know a ton because you’re so right!! My sister is 25 and yeah, I think that the older she gets, the more comfortable she has gotten with her medications. I guess it just comes with time? She mentioned to me that she did read your post about medications and it really helped her so thank you!! It opened up a discussion between us which was very helpful as well because it is a sensitive topic to bring up. I’ll be keeping up to date on your blog to see how you’re doing!

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