You say things will get better? You say I will adjust? You say smoother days will happen with right meds? Well, this week it is ludricrous! Unbelievable! Beyond reasonable! Even monsters aren't this cruel! For 2 months my neurologist has been trying to send me to a psychiatrist for my severe PTSD (which was diagnosed wrong as bi-polar, as my MS was diagnosed wrong, as my current 2 month old body rash has 4 different diagnoses from 4 specialties) (forget adding to our burial expense--there is no extra money cause the Monster is eating it$ (where was I?) oh, this weeks -adventure: MRI, CBC, Opthamolohist check corneas -need stronger glassses just got these last year!) oh back to the total stupidity that in retrospect should be ironically hysterical (actual I have had 2 bouts of hysteria this week), sooo I start looking for in network psychiatrist with PTSD per demand of neurologist out of about 30, there are NoNe, nada, zero, NOt ONE who is a certified psychiatrist experienced treating PTSD!! This is an area including Louisville and Lexington KY and everyplace in between "We not taking new patients; we are pain clinic only; we are sleep disorders only; we have NPs but no psychiatrists; he no longer works here, never heard of her; she only makes hospital visits, ad nauseam! By the end of the day I was hopeless, crying, and finally one office said we only have inhouse patients but we can give you an assessment of mental health " When? Tonight 8 pm she was psychiatrist who decides if person needed to be admitted I thought maybe she would I was in facility for a week in 2003 for PTSD and severe depression aAnyway she said I needed to see a counselor once a week and psychiatrist once a month so today is my appt with primary doc to discuss CBC results listen to this"you are dangerously low in sodium and need to slowly quit your anti-depressant and don't drink over 1 liter of water a day (I usually drink almost a gallon I love water!) So I am in such poor mental health I need psychiatrist and counselors asap, but primary took away my ONE SSRI that helps control my crying reaction to emotional stimuli and my temper tantrums that have developed. Now isn't that ironically hysterical????
No way!!: You say things will get better... - My MSAA Community
No way!!
agapepilgrim
I'm sorry you're going through such a difficult time. I won't say that I understand, because I can't.
I hope that you get the help you need. Although all our journeys are different, you aren't alone.
Take care of you!
Carrie
I really don't know what to say but can any of your doctors recommend you to anyone even if it's a doctor to help you find someone to slowly work with you. There got to be some one.
I hope you find someone soon.
I just want to put this out there if you go to an emergency room do you think they could hep you?
Good luck to you I don't know if you believe in the power of prayer but I will at you to my prayer list. Since I have been doing this blog my prayer list has grown. So agrapepilgrim your on my list. Good night for now.
Sometimes a trip to the ER gets the ball rolling toward treatment and referrals to the right person. This sounds like crisis time.
You're on many prayer lists right now.
ssdw1958 you better believe I am a prayer warrior!! I hound ZGod all the time, like the woman who kept knocking on kings door for bread. And he has saved me litterallly from death at least 4 times I vividly remember! I know Heviscsnle, but this is to all work in His plan if we keep bombarding his ears! Thank you so much!
That's Good 😊 to know because I put your prayer 🙏🏼 in already. Done andDone
agapepilgrim one good thing that's come out of this is that you are posting again, I have missed reading your humourous posts. Now if I didn't know you I would say that you had written some comedy sketch but it's unbelievable what you are having to endure. Job comes to mind, you must be one mighty warrior to get all this thrown at you, and yet I can see alittle smile in the background. Have you tried just locking yourself in your room and then let rip, scream at the top of your lungs until you find relief. It's cheaper than doctors. Let me know if you try it, I will have my window open so that I can hear you all the way over here in wet uk? Hang in there my friend, I hope and pray that peace comes your way soon, big hug 🤗 blessings Jimeka 🌈 🦋 💐 🍫 👋
jimeka you didn't hear that loud rolling thunder on 7/13?? That was me screaming hysterically, crying, kicking my legs for about an hour into a pilllow back on our laundry room! And several times since I have screamed and cried into my pillow. That's why I know I need help. It happens too often!!!
I too am sorry you are dealing with so much.When life seems like one doc after another one symtptom after another ...keep forward there is hope.We are all in this together ....it often feels like it is all crashing in.Than a good doc said to me...remember I'm called a "Practicing" Physician.I practice on you...than he retired.....
agapepilgrim
I'm so sorry you are going thru this. I have seen many patients with low sodium from antidepressants. Hyponatremia, or Low sodium can cause confusion, nausea etc. it may be contributing to your symptoms.
Has your PCP reviewed all meds that might also contribute to low sodium? Anti epileptics like gabapentin, BP meds like Lisinopril or diuretics like HCTZ, opioids like hydrocodone?
My sodium dropped to 131 from Tegretol and I felt horrible (normal is 135-145). I reduced water intake and added salt to everything. Felt better but have to keep an eye on my sodium when I'm on Tegretol.
Is the beautiful pup a story I missed...I'm so sorry for your loss 😥
erash yes my pup said it was the Celexa and cut it in half at the same time my neurologist said I must find a psychiatrist and counselor for my PTSD has flared up worse due to MS flare up. And only psychiatrist I could find won't take patients on Valium. Drinking a lot of strong chamomile tea!! But am limited ton1 liter of fluid per day. My life stopped on 7/13 of this month when I lost my best furry friend. Only someone from a dysfunctional family would understand but Mandi was the first true unconditional love that was given to me and I had to see go into the ground. I was almost hysterical with grief.. I have never cried deeply at a funeral; I have never felt unconditional love. For 15 yrs she was by my side, even lying on the floor by the tub, by my desk, in my lap on the couch, sleeping close to me, going everywhere with me, for 15 years, licking the tears from my face even if it meant searching every room til she found me, playing chase around the couch, going for walks, lying in the hammock - what more can I say? She was my first deeply loved loss. I have been in mourning ever since, knowing there will never be another like her. Only God's love surpassed her love.
agapepilgrim im truly sorry about mandi
I know how heart wrenching a loss like that can be 😥
agapepilgrim When I posted my words of encouragement the other day, you were one of the people that I had in mind! I've whispered a prayer or two or three to God for you. Keep advocating for yourself! When I was feeling so lousy and was on the road to my MS diagnosis, I told a doc along the way that he was my last hope. He took me seriously and ran the right tests. There's a doc out there for you too!!
Sweet lady! We all love you here and our hearts are melting for your pain.
Please ask your Dr/psychiatrist about a mood stabilizer as opposed to an antidepressant.
That's what the neurologist promised Valium would do. Not working!!!
Bless your heart!
I find my self running into walls with Drs. Drowned in Dr appt.
I only let me neurologist change my depression meds do to my MS. My family Dr usually follows through.
I wish you the best on your appt. Hope you get the answers you need to help relieve all your stress!
agapepilgrim it is times like this I feel so helpless. I wish I could crawl through time and space and at least give you a hug. Know you are loved and thought of!
I am at a loss for words that would help.
I hope that your Primary Care doctor can/will help you to find the doctor that can help you. My thoughts are with you.
I was crying for 1-2 hours per day before Nuedexta. It is prescribed for pseudo bulbar affect, but has helped my depression also. Do you live in a Compassionate Care state? Cannabis oil can also be very helpful (taken at bedtime). I know the agony of insurance messing with medication as if they know more than your Dr about the meds you should take. If you are persistent you can get an override if your Dr convinces them that other RXs are not effective in your case. I had to "try and fail" 2 other medications before getting a medicine I had been taking for years from my Marketplace plan this year.
Please convince the people you love and yourself that your brain is no longer under your control. If you and your loved ones accept that your emotional responses are no longer filtered by reason, logic or perspective you will be able to cope a little. You can ALL look at your reactions (no matter how overly crazy you may feel) as a symptom of MS and NOT a loss of control, or change in personality or the way you feel about them. You no longer have the capacity to temper your response to the stresses of life, but you are still the person your family members care about. When my husband tells me you're not a lunatic you have brain damage it helps me feel less lost and I tell myself I am no different than a vet with PTSD. When someone with PTSD has brain damage that affects their emotional responses, no one would doubt their symptoms or believe they were capable of controlling them. My brain damage is just as real as someone hurt by a roadside bomb, and my difficulties are to be taken into consideration just as someone with PTSD. That makes things easier just reminding myself that it's not my fault it's the Brain Damage. My Dr. told me that "it is all in your head, because it's in your brain!"
I hope you get the help you need. I know it's frustrating!! You are in my prayers!!
@TracyShort no my family (husband and adult daughter will not believe my emotional outbursts are a reaction I cannon control and a part of brain damage. That is contributing to my depression. They think I should be able to control my emotions, control the anger, the crying, the loud angry words, and I am responsible for my behavior. That, along with all the other, is what has broken me. He supports me in any phsical weakness, but is judgmental in my uncontrolled emotions. I am learning the true meaning of humility.
Dear agapepilgrim
At first I was speechless, but then I realized I should try to help.
Before I do, I want to just say that I am in no way qualified to advise you on your mental health dilemma and I have a great deal of respect for what you are going through. I also don’t want to add to your burden with poor suggestions, so I ‘ve considered my response carefully.
Below are some thoughts that I think are worth sharing. They come from both my personal and professional experience. I hope they’re of some help to you.
1)I’m glad you were advised to see both a counselor and a psychiatrist. (It is difficult to find a psychiatrist that specializes in PTSD, hence your frustration. Since you are now set up with a new practice, I won’t get into that. ☺ ) However, it would be ideal if your counselor were a clinical psychotherapist (typically a PhD) who specializes in PTSD, since PTSD is a very complex disorder and you would want someone with good training.
It would also be ideal if the psychiatrist who prescribes your medication were a psychopharmacologist. They specialize in the various psychotropic medications. Maybe you could ask if these professionals are on staff.
2)If your PTSD is related to sexual abuse, it may be wise to choose a therapist whose gender is opposite that of the perpetrator of the abuse.
3)If you must come off of your antidepressant, it’s SO important to taper very slowly, and monitor for withdrawal symptoms, especially with your history of severe depression. It sounds like this is the plan from your post, but please be extra careful. It has been my experience that clinicians both don’t know how to safely taper, and don’t recognize the signs of withdrawal. I would like to alert you to this in the hope of sparing you from the ordeal that I experienced. You don’t need that on top of what you already are dealing with!
I HIGHLY recommend checking out the website surviving antidepressants.org for anyone tapering off of an anti-depressant. It discusses the safest way to taper and will give you a heads-up about potential withdrawal symptoms. In order to access the material, you have to sign up (like you do for this forum). It is completely free, takes about a minute, and I haven’t gotten any annoying emails, etc.
Once signed in, go to “Forums,” and begin with the section: “Read This First.” Then go to the first “Topic,” “Before you begin tapering - what you need to know.”
4)I understand that your hyponatremia is a serious issue; so tapering you off of this antidepressant will require a delicate balance. I am wondering if something could be added to your regimen, like maybe Mirtazapine, so that you have some sort of support while you are going through this taper? Is there a plan to slowly begin you on something else? Can you be given some sodium tablets as you go through this transition? How frequently will your PCP be checking your sodium levels? These are questions you may want to ask.
5)A minor point, but you’ll want to keep perspiration to a minimum, by staying cool. I imagine that you discussed this already.
Agapepilgrim, sorry for the book! Please don’t feel that you need to reply to me point-by-point (unless of course you want to) as that could take some time and energy, which are probably in short supply right now! I’m just hoping that this information is helpful to you in facing this challenge, and maybe averting some pitfalls? If I have overstepped my bounds in any way, please forgive me!
Will you keep us posted, when you have time, on how you are doing?
Along with everyone else, I’m sending my very best wishes for a smooth transition.
I’m glad to know that you’re a prayer warrior too, as that will undoubtedly help you.
Not to sound glib, but that is what matters most in the end. ☺ If all else fails, at least I know you’re in good hands there! 
Hugs,
Lisa
@Non_De_Plume thank you for you time, and advice. Evidently, you have experience. Now I understand why I respond better to female therapists! It would be nice to find the exact type of therapist you mention, but with HMO insurance, I am finding it difficult to find a doctor with half the experience I need! My primary did not say anything about teps of withdraw, just to cut back to 20 mg. He seemed to not me in a caring mood that day, yet he usually has been for 6 years. I go back in 2 weeks. Finally, one psychiatrist office called me back this morning, asked a lot of questions, then told me they do not take patients on Valium. I told him it was prescribed for sleep, and they said it is a flat rule. Told them I dould consider and call back. Thought that a rather judgmental harsh clearing house to elinate new patients. My response is to simplu stay in bed and cover my head, which i did for 36 hours. Sometimes longer. Thank you for your words of wisdome and your prayers. God is keeping me alive, and gives me grace, and I am praying He will help me find a good psychiatrst in my limited HMO in network gorup. Be nice to afford an HMO, but too many medical bills to pray higher premium to get the right therapist I need. I am trusting God to guide me to the right doctor for help. This coming Monday my neurologist will decide what choices are available for a new MS med, and whatever else to do. I am praying he is more concerned that was my primary care doc on Thursday. "No one ever cared for me like Jesus."
agapepilgrim You said, "My primary did not say anything about steps of withdraw, just to cut back to 20 mg. He seemed to not be in a caring mood that day."
Please be careful. That is what my doctor told me. Is that half of your original dose? You might want to ask him if you can stay at that dose for awhile (i.e. *more* than the 2 weeks until you see him next) to see how you adjust before decreasing further. Again, I don't want to suggest that I know better than your doctor, but I would like to spare you the disaster I experienced when this happened to me.
Very odd about the Valium disqualification policy. Can't figure that out.
I must have misunderstood. I thought you found a practice that was going to offer you a "a counselor once a week and psychiatrist once a month" but I guess that was just the recommendation given to you from the intake evaluator at the inpatient facility. Oh my. So you are still looking? If that is the case, then I would recommend starting with looking not for the psychiatrist with PTSD experience but for the psychotherapist who specializes in PTSD. The therapists work with psychiatrists whom they can refer you to for prescription medications.
Best of luck on Monday with your neurologist and new MS treatment plan. You have a lot of medication changes going on. May the Divine Physician oversee all of it!
Nom_De_Plume yes the doctor who works for a mental health hospital who makes an assessment for me (whether to admit or not) talked to me for an hour and half (free) and those were her recommendations. Their doctors who treat outpatients were all in Louisville, KY which is a longer drive for us. My emotions are just too raw to call anyone else. Usually, my primary or other doctor would find the specialist in my network and set up an appointment for me. Not this time, I am on my own, and I am too drained. Turning it over to the Divine Physician.
What makes a good neurologist?
Is it MS or not? No answer !
Need Pediatric MS Specialist
