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I had a Stroke this past summer.

Posted , 3 users are following.

lorraine21063
lorraine21063

I'm having quite a time getting used to the different lifestyle and managing the nerve pain, as well as figuring out the medications, side effects.

I'm also upset and very surprised to find according to some other sites on the internet that people are using the medications I need to control my nerve pain as recreational drugs.

I've been informed by my pharmacy that because of this, the government will start treating Gabapentin as a controlled substance.

This kind of recreational use is going to harm people like me who really need it, making it harder to go through the federal hoops that get set up because of irresponsible recreational use.

The amount of nerve pain I'm suffering with on a scale of 1-10, 10 being the worst is around 8 or 9 most of the time. it feels like I'm being electrocuted, and freezing (like it's buried in snow and in danger of frostbite)cry   at the same time from my complete left side of my body, face, arm, hand, and feet. I guess I got started on here to chat with others who might be going through the same thing.

 

0 likes, 10 replies

10 Replies

  • david55344
    david55344 lorraine21063

    Posted

    hi i had a mini stroke or tia early june  i am home now but struggling to cope with this massive life change i get a lot of pain in my left shoulder some days worse than otherseverybody tells me i have nade great progress in a short time but i dont see it that way i can gat about in a wheelchair and can walk very short distance with a tripod but it gets me own most days sitting here feeling useless sorry for going on to you about this 
    • lorraine21063
      lorraine21063 david55344

      Posted

      Hi David.

       The reason I started this discussion is that I have found that family, friends and loved ones quickly tire when we need to talk about it because although they love us the can't begin to imagine what this feeling of powerlessness and pain feels like.

       It's true I'm sure that you have made progress as I have, but I started this chat last night at 3:00 in the morning when the feeling that my left side was being tazed or electrocuted and there was no one to talk to about it. I do talk to God all the time but sometimes we need a Jesus with skin on.

      Never never apologize to me or anyone about going about this. Just continue to find people to connect with who can truly understand and always reach out to God about it. 

      Don't give up, stay in constant contact with your doctors in case they can adjust your meds, and if your insurance covers it, find a really good therapist to see at least once a week.

      If any of your doctors or their staff make you feel they are bothered by you, find another one. If it's a staff member, talk to them or the doctor they work for. You have to become your own strongest advocate. They wouldn't have jobs if we didn't need their services.

      I'm doing everything I suggested to you, but I still needed to talk to someone late last night. I am here to listen and even to pray for you if you'd like any time you need it.

      It's a catastrophic thing to be independent and taking care of others and in just a moment, lose all of your independence. I'm just figuring out that some of my feelings are actually feelings of grief; losing the function of my body.

      That's why we need others to talk to, to get through it. Each day I learn something new as well as having moments when I want to just give up and have a huge pity party.

      Finding others who have been through it is the most productive. Ok, now I have chewed your ears off. You are the first to respond to my chat, but again, any time you want to chat or have questions or comments I'm here. I'm sure there are others who will be joining.

      God bless you and remember...QUITTERS NEVER WIN AND WINNERS NEVER QUIT!!!

       

    • Chikoy
      Chikoy lorraine21063

      Posted

      Hi Lorraine,

      Thank you for your description of what you are going through. It gives me an idea of how others feel about being a stroke victim. Family, friends, relatives and even caregivers cannot really completely understand how it feels like. Only fellow victims can. And this is the advantage of this group discussion. I hope you hav a good therapist for your daily exercise. I guess in due time with practice and discipline, you will be able to get back most of your body functions. Just be positive about life. God bless!

    • lorraine21063
      lorraine21063 Chikoy

      Posted

      Thank you Chikoy. I do have good therapists and thank you for asking. It helps to let out feelings on here when no one is around to talk to. The times when pain is unbearable and I know others are going through it in many other places motivated me to start this discussion. Thank you for the encouragement. Are you a caregiver or a stroke victim? God bless you too. Lori

       

  • lorraine21063
    lorraine21063

    Posted

    Hello to whoever is following. 2 more things to add to my previous chat. I realized my usually really thick hair is about thinning out at an alarming rate.

    I asked my pharmacist to research all the medications I'm on. She finally found that the culprit could be my antidepressant, nortriptyline.

    While I was in Rehab, I thought the grief I was feeling over my loss of function and lifestyle was depression. I told my Doctor I was depressed because I kept having bouts of crying. So he promptly doubled my dose of Nortriptyline.

    After getting home and eventually noticing that I was experiencing grief, not depression I started weaning myself off of the extra 1/2 dose.

    I am communicating with my Doc thru all of this.

    I am a retired hairstylist and am having empathy for the first time for all the poor souls I used to take care of with thin fine hair. 

    I'm at the time of day that the nerve pain starts to get the worst, 3:30 pm and later. This is the time of day that I take the 1 dose of painkiller I have. I only take 1 dose a day because I never want to get addicted, and I always want it to work. It barely takes the edge off but I start feeling a little more human.

    Even though I'm now on about 600 mg of gabapentin 5x per day, I still get really bad pain about 1 and 1/2 hours before each dose. My doc (neurologist) is giving me some samples of extended release to see if it works better.

    In the beginning of all this when I was in ICU, a doctor came to see me. I think he was talking to me to see if I was a candidate for 1-month long stay at a rehab hospital. He wanted to see how badly I wanted to get better.

    My insurance is state insurance that always denies anything of great expense, so the doctors have to fight to get patients in. I'm not sure, but I think that's why they do this.

    So, the talk went something like this: Lori, no matter what medications we give you, it is a certainty that you will be back here unless (long awkward pause for lots of drama) you drastically change your diet and lifestyle.

    He waited another moment to let that sink in. I'm thinking in the moment of silence, how hard I'd tried to lose weight the previous year with extreme diet change. The doctors believed the reason for my stroke was high blood pressure and cholesterol. Of course, the diet I'd been on was low carbs and plenty of fats. I'd lost about 20 lbs and gained a stroke with it.`

    So as I asked the Doctor just what I should be eating, imagine my look of absolute shock when he said things like oatmeal, sweet potatoes high complex carbs. I looked at him like he had lost his last marble. I explained the previous diet I'd been on still feeling a little proud of my weight loss, and as I told him I realized that half and half was on that diet, lots of meat, and not much produce.  Then He suggested looking over the website "Nutrition.Org". 

    Later when I did, I realized that most if not all the food were fruits, nuts, and vegetables. I remember thinking, "that will be the day". I was also thinking, "I will do anything to prevent this again."

    So now I eat oatmeal with frozen blueberries or other types of frozen fruit at least 1x per day. I drink unsweetened Almond milk. I now add it to my coffee with no sugar. It's still very good. I eat very low sodium, lots of salads, avocados, beans, salsa and riced cauliflower (for crunch); and sweet potatoes. I'm also not eating any dairy or eggs. I'm actually not missing any of it unless I let myself get hungry and then happen to be around someone else eating those foods.

    Because my energy level is not very high, I try to buy bagged salads and keep all food prep as simple as possible.

    I am now 50 lbs lighter since the journey to lose weight started. There is more to share but I need to take a break on this for a while.

    Please let me know if I am giving any of you ideas or you enjoy reading this. Until then...God bless you all!

                                          

                                              With love, Lori 

     

    • Chikoy
      Chikoy lorraine21063

      Posted

      Hi lorraine

      I am a stroke victim also like you. I can feel how you are feeling with your situation. Mine was milder though. It happened last january. I Am still adjusting to my new situation. It takes a lot of patience to adjust. What i need to do now is make changes to our lifestyle so that it will not recur on the near future. 80% of stroke is preventable if we follow simple tasks like diet, taking daily medications, exercise, checking our blood pressure, and avoiding stress. I think you are doing a good job in making lifestyle changes. Keep it up. It is depressing indeed but keep your spirit high because it helps. God bless.

    • lorraine21063
      lorraine21063 Chikoy

      Posted

      Hi Chikoy. Thanks for the encouragement. Back at yousmile I just got back from a check-up. It will be interesting to hear about the cholesterol test. They changed some meds to include a fluid pill...Hurray!!! My neurologist is going to try me on some samples of extended-release Gabapentin as well.

       I want to encourage you to go ahead and make those lifestyle changes. Especially in the diet.

       I found I didn't even miss the dairy products as long as I was eating plenty of fruits veggies and complex carbs. Adding unsweetened Almond milk helped too. I've decided I'm gonna add chicken and fish maybe a few times a week. My doctor also told me the hair loss was from the stroke and that it would come back.smile

      Exercise can be as simple as a short walk in the morning or swimming at a local gym.

      Ok, take care, and God Bless

      Lori

       

  • lorraine21063
    lorraine21063

    Posted

    hello...just woke up with nerve pain and a spot next to a lump of fluid in my leg throbbing...ouch ouch ouch...gonna try to go back to sleep.took gabapentin.
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