I'm on the B1 Protocol, and haven't found the optimal level since I started with it 3 years ago.
I exercise as much as I can, and walk fast when I can. I meditate, and I'm trying Qi Gong.
I'm on a bunch of supplements, as well as the usual medications. I'm not going to make a long list right now, because it's not the point.
I meet with a neurologist, psychiatrist, psychologist, and my PCP.
And yet, despite all of this, I suffer every day. I have panic attacks every 2-3 days. Simple necessary errands that were once easy to accomplish become very difficult. Sometimes I have periods of extreme fatigue. Sometimes movements seem to hurt, or I endure periods of hypersensitivity, when all stimuli, efforts, or thoughts are painful. Sometimes I endure serious constipation, and when I have to defecate, I don't feel a pressure in my intestine, but my whole body feels bad.
I know that some within this group will advise me to be strong or be patient, but it seems that the disease corrodes my ability to do so. It feels demonic. I've considered suicide, but I realize that like most humans, I fear death, and there's no guarantee that it'll end suffering.
Does anyone in this group have advice on what to do when he or she feels this way?
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Alock2020
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Qigong has been very helpful for me, particularly in regard to state of mind. Understand that the core purpose of Qigong is not about the gentle exercises. The purpose of the exercises in Qigong is to cultivate the Chi, which feels like Divine Love. As a result, life for me is good even though I do suffer from motor impairment. I often awaken around 3:00 a.m. and spend the rest of morning in Chi meditation, which I prefer to sleeping. Details of my Qigong story here: healthunlocked.com/cure-par...
I lost what I had written, aParkie tremor touched my screen when it shouldn't have so here goes again.
Some of your symptoms are very familiar to me. Alcock. It would be good to be able to give you words of wisdom and hope but I am not one of those who talk about pd as a gift, some gift. I think PD is more like a thief and now its invading my personal space. And I don’t hand out platitudes or vow to “pray” for you, (that’s too north American for me!)
I think All I can do is tell you my observations from what you have written and how i would approach despair.
As Simon says on another thread - Simplify
I notice you are engaged in a few activities that are unproven. They work on hope but they are not working. You have spent 3 years trying to get VitB1 therapy to work. Three years trying and it still hasnt worked, are you waiting for a miracle. An unsuccessful 3year trial tells me the chances of hitting the jackpot are very very slim. No amount of wishful thinking is going to change that.
I would forget about an elderly man (who doesnt have PD, he has essential tremor) telling you to fast walk ( oh if only it were that easy) to reverse symptoms. After 32years he has no-one who has managed the same.
Next I would stop making such expensive urine and only have 1 or 2 supplements if that. How can you know what causes what otherwise.
I would focus on stabilising on conventional meds and I would Address constipation first followed closely by depression and anxiety. If the bowel is sluggish the pills cant work. They have to get through the stomach to the intestine to be effective.
Instead of fighting conventional meds I would be grateful that there are drugs that correct my chemical inbalance even if there are side effects.
I hope the psych has worked with you regarding panic attacks..
To quote Simon again
SIMPLIFY SIMPLIFY SIMPLIFY
Now you may well reject what i have written and say something about alternative health regimes but from what I can see they have not helped you to date, will they ever?
it is simply that it is largely a north American response, at least I think it is, and I see it as a cultural difference. Christianity has developed differently in the US and Britain and how it is expressed is different. Such differences interests me, not being either Nth American nor British by upbringing. But I have been known to be wrong!
There is no magical answer, if there was we'd all be doing it. Some supplements seem to work for some people and not others. I also feel that the placebo effect has a lot to do with the success stories. Don't get me wrong I've tried, and will continue to try different things to help, and new discoveries are made all the time. It's important to keep hope. My neurologist said he is confident there will be a cure in 5-10 years.... In the meantime, excerice as annoying as it is seems to be the main thing that does something.
I've definitely felt suicidal, I think that's a very normal response to feel that way given the situation we find ourselves in. I see it this way, life is so short anyway, I would rather be a shaky observer than nothing. We're all going to get old and die, that's guaranteed. So as bad as it is make the most of here and now, even if it sucks.
The other thing to consider is the effect our mental health has on our symptoms. If I'm feeling anxious my regular meds don't touch my symptoms. If I'm depressed, I'm sure as hell not doing any exercise, or eating well. I would definitely consider getting support for your mental health, as Hikoi suggested, because anxiety and depression can be incredibly debilitating on there own even without pd.
why don’t you ask if you can be prescribed clonazapam? Take a minimal dose ie the least that makes some difference. Ask for 0.5mg per day and cut into quarters. Take morning, afternoon and 1/2 at night. Take melatonin at night so you sleep and don’t lie worrying.
If you can, try to do just one day at a time, trying to find some little bit of enjoyment in the day. Play a song you like and listen to the musical instruments and try and hear some new thing in it. Sit in the sun a feel the warmth and the light. Look at a beautiful flower or view and notice it. Stroke a pet. Whatever you used to enjoy try and do it.
When you eat concentrate on the flavours.
Stop for a minute and focus on something you can see, something you can hear, smell, taste and touch. Trying to be in the present might take your mind off the what ifs and fear of tomorrow.
ps too much or too little levodopa can cause constipation.
As you mention you’re on B1 I feel I must ask… could any of your symptoms result from your B1 dose being too high? You don’t say what dose you have been taking and for how long. Most people find they need to tweak the dose lower from time to time. I would suggest you might test this theory by taking a 1-2 week B1 break to see if symptoms reduce.
I've been taking 100 mg B1 pills sublingually, increasing the dosage by holding the solution in my mouth for between 15 minutes and gradually increasing to 32 minutes (so far), and then spitting what's left out. One problem re: symptoms of B1 overdose is that I've had periods of high anxiety since I was diagnosed, so I can't rely on considering "jitteriness" as a symptom of B1 overdose.
Are you taking a 100 mg tablet EVERY day? That is very high, even if you are not holding it in your mouth for the suggested 30 minutes. Btw, there’s no need to spit out anything left in your mouth. You can swallow it when you can’t hold it in your mouth any longer. We have hundreds taking sublingual tablets on the Facebook group “Parkinson’s B1 therapy” and most people are on 50 mg or 25 mg (cut tablet) just 2 or 3 days a week. I would recommend that you take a break for 1-2 weeks to see if you feel better. I appreciate that symptoms come and go making it hard to work out whether the B1 is affecting symptoms negatively. However it would be annoying if you were making your symptoms worse unnecessarily.
It depends what happens with your symptoms during the break. If your symptoms improve it will be a sign that your B1 dose was causing the worsened symptoms and you should restart at a lower B1 dose. If symptoms don’t improve during the break then those worsened symptoms probably were not caused by the B1 dosage being too high so no need to reduce the dose. Signs of overdose can be any symptoms which worsen quite quickly.
You’re on the right track, reaching out to good people who understand! I know many who read this are praying for you, that despair does not win. Here an idea even if you are not religious, take a chance and ask the great, true and loving Highest Power to help you, admitting that you cannot do this without Him, Then imagine how happy He is that you are turning toward Him. Then watch for things to happen. With Him on your team you cannot lose. Maybe there will be a cure for yiu, or maybe you will grow through suffering. Maybe you will find a new knowledgeable doctor or friend you can really trust and talk to. Or maybe your relationship with Him will grow, through prayers, scriptures, good people …I might not be instant, so hang in there and turn to him daily. Thanking him for the good in your life, expressing sorrow for ways you may have hurt Him. Asking for help with decisions. Crying about your pains and losses and even your anger. He can take it. He can turn all things for good. He will forgive all and give you the help you need and put his servants in your life. Just ask and brace yourself for wonderful love
I spent a lot of my life in despair, and over decades it improved and eventually resolved.
People are so different in what gives them comfort.
I would suggest that after meditating you pose this question to your higher self or to God and ask “is there something I can do to feel better”, or on another day, “ what do I need to do to feel better today”. Be open to whatever comes, supplements, stopping some supplements, changing patterns of thinking, getting together with someone, journaling, breathing exercises, forgive. Something might come, or nothing might come. If nothing comes, you have still started the wheels of your subconscious churning.
Journaling does have evidence it works, and you could include a question about it in your journal. Another question “what was the best part of my day”. It might give you some clues also to what might help.
When I was a child I would occasionally pray, “God if you are there”. I did not believe in God, but when I could not sleep I would start a prayer this way, and assume for a few minutes God existed. I remember thinking as a child “I wish I had trouble sleeping more often.” It seems obvious to me now that some part of me wanted this interaction with God even though I did not consciously know it.
I am truly sorry you have felt despair and dread so often lately.
I hope you find some things that bring more worthwhile moments to your days.
What seems so simple is the hardest thing to do. But if done may bring some relief...Focus your attention away from the Pain (emotional and physical). Music, the outdoors, colors around you, the feel of a soft blanket. A pet you love...
In this moment, you are safe. Find the moments of pleasure, or at least neutrality. Get physical contact with people who care about you, if you can...
What your mind focuses on grows. When I get lost in the fear, it feels like there is no way out. But there is, and you have a choice.
I spent the first four or five years rigidly exercising, following diet, taking a slew of supplements. All driven by fear. That fear is soooo stressful.
Pleasure, love, comfort, connection, acceptance, are all the antidote to fear.
Now I'm slowly allowing myself to shift out of fear. It's not easy, I know. But it can be a light at the end of the tunnel. Even a few minutes a day can help.
That said, I am absolutely not opposed to psychiatrists meds if you need them. I do, still.
Wishing you well, and to finding a path forward...
Also, just a thought. Dopamine, as I understand it, breaks down into noradrenaline. You didn't mention your PD meds, but dose and timing can have an impact.I had the experience many times that too much levodopa left me panicky and exhausted at the end of the dose. Less was much better.
I do have to deal with some periods of symptoms during the afternoon, but much better that the adrenaline, which feels so much like intenneurologist.
On the other hand, not enough levodopa can be problematic in other ways.
I have just recently experienced a one day attempt to take 100 mg of Sublingual B1 and the resulting feeling of internal shaking , anxiety attack ( first experienced ever) weakness, and hypersensitivity to pain and unable to think straight so that I could not determine a good course of action and it took 3 days to finally go away. It was so strong that I still have not had the courage to try a 1/4 tablet of 25 mg. once a week .
I strongly support what HIKOI and DAP1948 said above
I now understand the word "dread" but do not give up yet. I am experimenting with vibrators, if you have one hold it in your hands for 15 to 30 minutes and try it on your shoulders.
Wishing my reality was something else is what makes me feel worse. I often fail, but when I just accept what's going on right now I usually feel better.
My hwp was diagnosed in 2010, and has progressed slowly over the years. Exercise helped him, he’s now doing Neuro PT. After the initial dismay, depression etc, he seems to cope by taking his meds as scheduled, but mostly ignoring his PD. Listening to podcasts, researching, contributing to the Neuro visits and all my job. He’s not in denial, he just doesn’t put PD first in his mind. Red Light therapy every day helps him feel better. Life continues to change, we adjust, but neither are we “spring chickens” any more.
But speaking of constipation, he has found taking a 400mg Magnesium oxide capsule daily works for him.
My faith is what sustains me and it is the faith in the true and living God. When I was diagnosed instead of asking why me it occurred to me why not me? As a Christian I pray and yes I would love to be healed but only if it’s God‘s will. There are so many alternative treatments out there that I read about so I ask for God‘s guidance in determining what’s best for me. I just started the B1 therapy and hope to do it and find my sweet spot. But I’ve also looked into infrared therapy through a company mentioned here often Symbyx. I have corresponded with them and we agreed I should not do both of them at the same time so I’ll wait a while to do the infrared but in the meantime pray for God‘s divine direction.
I too am on a lot of supplements and vitamins and supplements can often be some thing we don’t know if it’s helping or not but it can’t hurt so I stay on them. My son gave me a combination of supplements to take before bed that seem to be helping. I take 2 L Thenine, two magnesium and one ipigemine before I go to bed and then if I wake up in the middle of the night I take melatonin. I have also used a cream that has magnesium in it and I rub it on the areas that are tight or achy.
Alock, so sorry you are experiencing panic attacks. Did any of your doctors prescribed any meds for anxiety temporarily? Did any of your doctors review all the meds and supplements to see if one is affecting the other and slowly take you off some of them to see if you feel better? Then ease back on as applicable?
The suggestions posted are good - meditation, start off with deep breathing and relax, exercise, perhaps a low dose of Melatonin before bed, relax with a cup of chamomile tea, listen to some relaxation music, watch a funny movie. Acupuncture? Reiki (healing hands) session?
Hope you are doing better. Let us all know how you are today. In the meantime sending you best wishes and good vibes.
Gabapentin and Valium for anxiety, Bupropion for depression. Yes, my psychiatrist and pharmacist reviewed the meds/ supplements and informed me that there were no negative interactions.
My heart goes out to you you. But the question I have to ask is that whether you are under the care of an MDS and if you're taking Sinemet to get symptom relief?
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